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Rare Disease

All Audio
Updated On: Jul 18, 2022
Total Stations: 8
Total Audio Titles: 231

Popular "Rare Disease" Stations

World of Promise A podcast focusing on biotechnology and its promise to transform the lives of people living around the world with rare and serious diseases.

During each episode, we explore a topic related to biotechnology and rare disease by interviewing doctors, scientists, patients, family members of people with rare or serious diseases, and or other experts in biotechnology. The show both highlights the exciting world of biotechnology and the impact it is having on patients while also offering advice and insights for people who have rare or serious diseases as well as their family members or caregivers.
Demystifying NMO Neuromyelitis Optica Spectrum Disorder (NMOSD) is a neurological autoimmune disease that causes blindness and paralysis. While NMOSD is a rare disease, autoimmune diseases are common, and so is finding scientific and medical jargon tricky to understand. In this podcast, The Sumaira Foundation and Connor B J Foundation work to simplify the science associated with NMOSD and related neuro-immune disorders, bringing together patients and experts.
Wait, how do you spell that?: A rare disease podcast Wait How Do You Spell That? is a rare disease podcast produced by Patient Worthy. We talk about issues affecting people rare and underdiagnosed conditions and interview advocates from across the community. We‘re definitely not doctors, and we can‘t give you medical advice. We‘re just here to chat and learn about the diseases that even doctors can‘t seem to spell. Check out the latest in rare disease news at PatientWorthy.com.
Sarc Fighter: Living with Sarcoidosis and other rare diseases This podcast is about battling the disease Sarcoidosis as well as other rare diseases.
‎My rare disease Welcome to 'My rare disease' podcast. This is a platform where I raise awareness of something that affects 1 in 17 people, rare disease. By chatting to patients, health professionals and advocates, we talk about all aspects of rare disease including relationships, mental health and much more. I cannot wait for you to hear some truly inspiring stories from some absolutely amazing people.
‎Hereditary Diseases Pod Hear the stories behind challenging cases in Australian practice. Join clinical experts as they discuss hereditary and often rare diseases and provide practical insights from their experiences to facilitate timely diagnosis and effective management.


Sanofi‐Aventis Australia Pty Ltd trading as Sanofi Genzyme. ABN 31 008 558 807. Talavera Corporate Centre, Building D, 12‐24 Talavera Road, Macquarie Park, NSW 2113. GZANZ.FABR.19.11.0451. Date of Preparation December 2019. FAB0015.

Popular "Rare Disease" Playlists

Autism Parenting This playlist contains all the things I wish I had known when I first started on my autism parenting journey.

You can find me:

theautismdad.com
The Autism Dad Podcast
Breast Cancer Awareness October is Breast Cancer Awareness month, but what things do we still need to know? Sam Hacker Audio Station
Top Mindset Tips for Healing Back Pain A playlists of snippets focusing on the mindset approach of healing back pain. ‎Building Bulletproof Backs
Top Movement Tips for Healing Back Pain A playlist of snippets focusing on movement approach for healing back pain. ‎Building Bulletproof Backs
Top Emotional Tips for Healing Back Pain A playlist of snippets focusing on the emotional approach of healing back pain. ‎Building Bulletproof Backs

All "Rare Disease" Audio

Episode 66 | Unveiling Possibilities - All about the upcoming Sarcoidosis Summit from the Foundation for Sarcoidosis Research Every year the Foundation for Sarcoidosis Research presents a summit, where leading experts, patients and caregivers can gather to discuss what's going on with our illness.  It's also a time to learn more about the latest research and to just be with others who get it.  The summit is virtual this year, so you will join on line, but you still get to visit the Exhibit Hall, the plenary sessions, and have Q and A with doctors, researchers and the pharmaceutical companies which are now lining up with exciting research. 
In this episode of the Sarc Fighter Podcast, the FSR Director of Patient Programs, Mindy Buchanan joins me to talk about the highlights of the summit, how you can sign up and how to participate at no cost if you are unable to pay the fee.  Mindy is truly excited about all the summit has to offer, and she will share that enthusiasm during the podcast.

Show Notes
All about the Summit: https://www.stopsarcoidosis.org/summit-2022/
Contact Mindy: mindy@stopsarcoidosis.org
How Efzofitimod works in the body https://atyrpharma.com/programs/atyr1923/
Want to learn more about the clinical trial for efzofitimod?  https://atyrpharma.com/patients/clinical-trials/
aTyr Pharma News Release: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-presents-clinical-data-efzofitimod-atyr1923-american
 
The New FSR Initiative
https://www.stopsarcoidosis.org/foundation-for-sarcoidosis-research-launches-groundbreaking-global-rare-disease-initiative/
Nourish by Lindsey: https://www.nourishbylindsey.com/
Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751
Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy
Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html
MORE FROM JOHN
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE
More on aTyr Pharma: https://www.atyrpharma.com/
Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!
If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier
The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/
Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E
My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/
email me  carlinagency@gmail.com
Episode 65 | aTyr Pharma is getting closer to a potential breakthrough in treating Sarcoidosis aTyr Pharma is launching a new clinical trial for a drug called Efzofitimod, which has thus far shown significant promise as a drug that reduces dependence on prednisone for pulmonary sarcoidosis patients.  In addition, the drug has also produced positive results in helping patients improve their overall condition and quality of life.  In this episode of the Sarc Fighter Podcast, aTyr CEO Dr. Sanjay Shukla joins me to talk about testing to date, and to announce what could be the final stretch of testing and analysis before Efofitimod reaches FDA approval, and would then be available to treat sarcoidosis patients. 
Will this be the first significant breakthrough in 20 years?  Listen in as Dr. Shulka walks us through the successes so far and what must still happen for Efzofitimod to become available for patients.

Show Notes
How Efzofitimod works in the body https://atyrpharma.com/programs/atyr1923/
Want to learn more about the clinical trial for efzofitimod?  https://atyrpharma.com/patients/clinical-trials/
 
aTyr Pharma News Release: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-presents-clinical-data-efzofitimod-atyr1923-american
 
The New FSR Initiative
https://www.stopsarcoidosis.org/foundation-for-sarcoidosis-research-launches-groundbreaking-global-rare-disease-initiative/
The FSR Summit: https://www.stopsarcoidosis.org/events/fsrs-third-annual-virtual-sarcoidosis-education-summit-unveiling-possibilities/
The Mayo Clinic article: https://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/how-to-be-happy/art-20045714
Universal Barriers Podcast:  https://www.stopsarcoidosis.org/sarc-fighter-podcast/
More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/
Ignore No More https://www.stopsarcoidosis.org/ignore-no-more-foundation-for-sarcoidosis-research-launches-african-american-women-sarcoidosis-campaign/
Sarcoidosis Awareness Film: https://www.purpledocumentary.com/
Nourish by Lindsey: https://www.nourishbylindsey.com/
Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751
Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy
Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html
MORE FROM JOHN
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE
More on aTyr Pharma: https://www.atyrpharma.com/
Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!
If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier
The Foundation for Sarcoidosis Research <a href="https://w
Episode 64 | The Leadership Team at the Foundation for Sarcoidosis Research with an exciting announcement! In Episode 64 of the Sarc Fighter podcast Mary McGowan, CEO of the Foundation for Sarcoidosis Research and Tricha Shivas, Chief Strategy Officer talk about an exciting new development that will make it easier to patients to find the right doctor, and for doctors to find the right methods to treat Sarcoidosis. 

 
Show notes
The New FSR Initiative
https://www.stopsarcoidosis.org/foundation-for-sarcoidosis-research-launches-groundbreaking-global-rare-disease-initiative/
Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk
The FSR Summit: https://www.stopsarcoidosis.org/events/fsrs-third-annual-virtual-sarcoidosis-education-summit-unveiling-possibilities/
The Mayo Clinic article: https://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/how-to-be-happy/art-20045714
Calvin Harris Blog: https://sarcoidosisnews.com/2022/05/19/im-grateful-that-despite-sacroidosis-i-can-run-my-own-race/
aTyr Pharma News Release: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-presents-clinical-data-efzofitimod-atyr1923-american
Merlin: https://merlin.allaboutbirds.org/
Universal Barriers Podcast:  https://www.stopsarcoidosis.org/sarc-fighter-podcast/
More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/
Ignore No More https://www.stopsarcoidosis.org/ignore-no-more-foundation-for-sarcoidosis-research-launches-african-american-women-sarcoidosis-campaign/
Sarcoidosis Awareness Film: https://www.purpledocumentary.com/
Nourish by Lindsey: https://www.nourishbylindsey.com/
Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751
Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial
Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering
Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy
Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html
MORE FROM JOHN
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE
More on aTyr Pharma: https://www.atyrpharma.com/
Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!
If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https
Episode 19: Leslie Michelson, Founder and CEO, Private Health Management How do you obtain the best possible patient care available? On this week's Few & Far Between podcast, host Chris O'Brien welcomes patient advocacy innovator Leslie Michelson for a conversation on the importance of patient support, guidance, and healthcare accessibility.
Episode 20: Professor Bertil E. Lindmark MD, PhD, Author and CMO at Galecto, Inc. What do the next 100 years have in store for healthcare and clinical research? Biorasi's Few & Far Between podcast welcomes Professor Bertil E. Lindmark MD, PhD, author and CMO at Galecto, Inc., for an in-depth discussion on the biological revolution and trends in the life sciences.
Episode 18: Karen Petrou and David Brint - BioBonds On this week&rsquo;s Few & Far Between podcast episode, Biorasi&rsquo;s CEO, Chris O'Brien, welcomes Karen Petrou and David Brint for an in-depth discussion on BioBonds and how they can jumpstart funding in clinical research for rare disease and other disorders.
Episode 21: Jill Hawkins, Founder and President of the FAM177A1 Research Fund How do you start in building a rare disease foundation? Biorasi's Few & Far Between Podcast Welcomes Jill Hawkins, Founder and President of the FAM177A1 Research Fund, to discuss the impact of an ultrarare disease on her family and the importance of moving forward towards awareness, support, and treatment.
The Importance of Persistence, feat. Patient Advocate Nathan Ehrlich In this episode, we speak with Patient Advocate Nathan Ehrlich about SAMD9L mutations and their connection to a range of conditions, including bone marrow failure disorders, cytopenia and ataxia-pancytopenia syndrome. If you'd like to get in touch with Nathan, you can email him at nathan.ehrlich@gmail.com. You can also check out the SAMD9L mutations Facebook support page here.
Getting the Support You Need, feat. Cancer Commons In this episode, we speak with Shelley Frisbie and Dr. Kaumudi Bhawe of Cancer Commons, a non-profit dedicated to providing assistance to advanced cancer patients. We discuss why having a dedicated support team can be so helpful and why every cancer diagnosis is unique.

To learn more about Cancer Commons, visit their website here. You can also connect with them on Facebook, Twitter and LinkedIn.
The 2022 Living Rare, Living Stronger Patient and Family Forum In this episode, we sit down with Tiffany Sammons and Pam Mace from our partners over at NORD to preview the upcoming Living Rare, Living Stronger Patient and Family Forum. This exciting yearly event brings together patient advocates and their families from around the world.
Learn more about the Patient and Family Forum, taking place June 26 in Cleveland, Ohio, here.
Follow Nord on social media: Facebook Twitter Instagram LinkedIn
Episode 63 | The birds and finding contentedness When sarcoidosis invades your life and rearranges your priorities, it's hard to cope.  Sometimes it's the little things.
Sarcoidosis makes most of us slow down.  For some of us almost to a crawl.  But even while we are slogging along there are ways to be content with our lives.
Here's my stab at it.

Show notes
Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk
The FSR Summit: https://www.stopsarcoidosis.org/events/fsrs-third-annual-virtual-sarcoidosis-education-summit-unveiling-possibilities/
The Mayo Clinic article: https://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/how-to-be-happy/art-20045714
Calvin Harris Blog: https://sarcoidosisnews.com/2022/05/19/im-grateful-that-despite-sacroidosis-i-can-run-my-own-race/
aTyr Pharma News Release: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-presents-clinical-data-efzofitimod-atyr1923-american
Merlin: https://merlin.allaboutbirds.org/
Universal Barriers Podcast:  https://www.stopsarcoidosis.org/sarc-fighter-podcast/
More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/
Ignore No More https://www.stopsarcoidosis.org/ignore-no-more-foundation-for-sarcoidosis-research-launches-african-american-women-sarcoidosis-campaign/
Sarcoidosis Awareness Film: https://www.purpledocumentary.com/
Nourish by Lindsey: https://www.nourishbylindsey.com/
Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751
Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial
Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering
Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy
Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html
MORE FROM JOHN
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE
More on aTyr Pharma: https://www.atyrpharma.com/
Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!
If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier
The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/
Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  <a href="https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFm
Episode 61 | Expectations and Happiness with Sarcoidosis Sarcoidosis patients have shared many stories with me here on the Sarc Fighter podcast.  It got me thinking about expectations.  What did we expect from our lives before sarcoidosis?  What do we expect now?  Do we ever expect to get our old lives back -- and how hard should we try to get there. 
Managing expectations can be tough and perhaps frustrating.  But it can also be fulfilling.
In Episode 61 of the Sarc Fighter Podcast, I dig in really listen to what some of my guests had to say and look at how they are choosing to manage their lives -- and their expectations.
(Be sure to listen at the end for the Full version of Zombie - The official song of the Sarc Fighter Podcast!)
Show notes
Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk
Juliet's fundraising page: https://www.justgiving.com/fundraising/julietcoffer2
Remember these hashtags for April!  #WhatIsSarcoidosis #MakeItVisible 
Universal Barriers Podcast:  https://www.stopsarcoidosis.org/sarc-fighter-podcast/
More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/
Ignore No More https://www.stopsarcoidosis.org/ignore-no-more-foundation-for-sarcoidosis-research-launches-african-american-women-sarcoidosis-campaign/
Sarcoidosis Awareness Film: https://www.purpledocumentary.com/
Nourish by Lindsey: https://www.nourishbylindsey.com/
Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751
Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial
Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering
Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy
Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html
MORE FROM JOHN
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE
More on aTyr Pharma: https://www.atyrpharma.com/
Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!
If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier
The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/
Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E
My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/
email me  carlinagency@gmail.com
Episode 62 | Garrie Farrow had troubles wearing her cute shoes. The problem was in her lungs. Garrie Farrow has been fighting sarcoidosis for 15 years, and maybe longer.  It has spread from her lungs to other parts of her body including her ears.  Yet she is still working - and still fighting.  In fact she spends a great deal of time helping other Sarcoidosis patients as well.  In Episode 62 of the Sarc Fighter podcast, Garrie shares the story of how sarcoidosis started out in her lungs, how doctors may have mishandled the early diagnosis and how sarc has had a tragic impact on her family.

Show notes
Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk
Juliet's fundraising page: https://www.justgiving.com/fundraising/julietcoffer2
Remember these hashtags for April!  #WhatIsSarcoidosis #MakeItVisible 
Universal Barriers Podcast:  https://www.stopsarcoidosis.org/sarc-fighter-podcast/
More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/
Ignore No More https://www.stopsarcoidosis.org/ignore-no-more-foundation-for-sarcoidosis-research-launches-african-american-women-sarcoidosis-campaign/
Sarcoidosis Awareness Film: https://www.purpledocumentary.com/
Nourish by Lindsey: https://www.nourishbylindsey.com/
Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751
Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial
Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering
Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy
Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html
MORE FROM JOHN
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE
More on aTyr Pharma: https://www.atyrpharma.com/
Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!
If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier
The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/
Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E
My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/
email me  carlinagency@gmail.com
The following is a web-generated transcript of my interview with Garrie.  Please excuse any spelling or punctuation errors.  jc
Welcome back to the Sarc Fighter podcast. And joining me now is Gary Farrow, uh who plays many roles within the foundation for Sarcodosis Research as a volunteer and is coming up on 16 years as a Sarc su
Episode 60 | Jack Boepple’s cardiac sarcoidosis hit him like a linebacker. And he would know. Jack Boepple is a former Boston marathon runner.  A dedicated Cyclist and a fisherman who disappears into the wilderness for a week every year with his canoe and camping supplies.  But even all of that couldn't prevent sarcoidosis from attacking his heart.  In Episode 60 of the Sarc Fighter podcast, Jack shares the story of how sarcoidosis knocked him back more than a few steps -- and how he never saw it coming -- even when he was in the hospital beating most of the tests.

Jack Cardioversion image
 
 

Show Notes:
Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk
Remember these hashtags for April!  #WhatIsSarcoidosis #MakeItVisible 
Here is a link to all the activities for April ! https://www.stopsarcoidosis.org/awareness-2022
Universal Barriers Podcast:  https://www.stopsarcoidosis.org/sarc-fighter-podcast/
More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/
Ignore No More https://www.stopsarcoidosis.org/ignore-no-more-foundation-for-sarcoidosis-research-launches-african-american-women-sarcoidosis-campaign/
Sarcoidosis Awareness Film: https://www.purpledocumentary.com/
Nourish by Lindsey: https://www.nourishbylindsey.com/
Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751
Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial
Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering
Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy
Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html
 
MORE FROM JOHN
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE
More on aTyr Pharma: https://www.atyrpharma.com/
Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!
If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier
The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/
Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E
My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/
email me  carlinagency@gmail.com
Below is a web generated text version of my interview with Jack Boepple.  Please excuse any spelling errors. 
Welcome back to the Sark Fighter podcast. And joining me now is Jack Boepple Lives in Chicago and he's a fellow SARC fighter. Jack, welcome to the podcast.
Thank
The Unusual Suspects Live Recording Part 2 This is Part 2 of a live recording of The Unusual Suspects: Rare disease in everyday medicine which was hosted by M4RD and The Medical Genetics Section of The Royal Society of Medicine in February 2022. The Royal Society of Medicine event page for The Unusual Suspects 2022In this second part you will hear about:The role of genomics in achieving health equityDr Denise Williams, Consultant Clinical Geneticist, Birmingham Women&apos;s and Children&apos;s NHS Foundation TrustEnhanced Genetics Services Evaluation ReportGenome UK: The future of healthcareReading recommendation!! The Immortal Life of Henrietta LacksNarrative based medicine and intersectionalityDr Sondra Butterworth, Community Psychologist, RareQoLListen to Sondra talking about inclusivity in Season 1 of the podcast hereThe Whose Voice is it Anyway report that was produced by RareQoL , M4RD & NHS England.Improving knowledge and understanding of rare disease: Lessons learned from an an unusual heart attackDr David Adlam, Associate Professor of Acute and Interventional Cardiology, University of LeicesterListen to the episode featuring Dave and BeatSCAD called Not your usual heart attack herePutting the ‘I’ in Intersectionality: the unspoken pandemicMiss Zainab Alani, Medical Student, University of Glasgow & The Student Voice Prize 2021 winner Learn more about Myasthenia Gravis through myaware and OrphanetSponsorship NoticeM4RD was able to produce this event thanks to sponsorship by by Alexion Therapeutics and SOBI. Neither company has any editorial control over content and sponsorship does not equate to endorsement. Views expressed in this episode are personal and do not reflect those of the companies involved.This podcast is brought to you by Medics4RareDiseases. M4RD receives sponsorship from commercial companies. In 2022 this includes:Alexion Therapeutics, Amicus Therapeutics UK Ltd, BioMarin, Bionical Emas, Healx, Kyowa Kirin, Orchard Therapeutics and SOBI.These companies have no editorial control over this or any other M4RD content. Sponsorship does not equate to endorsement of companies or products. Views expressed during this podcast are personal and don&apos;t reflect those of M4RD sponsors.Go here to find out more about how M4RD works with sponsors. Companies have no editorial control over any of M4RD&apos;s activities or content of this podcast.
The Unusual Suspects Live Recording Part 1 This is Part 1 of a live recording of The Unusual Suspects: Rare disease in everyday medicine which was hosted by M4RD and The Medical Genetics Section of The Royal Society of Medicine in February 2022.In this first part you will hear from Dr Lucy McKay on Rare Disease 101 and Aisha Seedat on The UK Rare Disease&apos;s Framework. Aisha lives with mucopolysaccharidosis type IV (Morquio Syndrome) and she reflects on what she would like to see from the Framework. M4RD was able to produce this event thanks to sponsorship by by Alexion Therapeutics and SOBI. Neither company has any editorial control over content and sponsorship does not equate to endorsement. Views expressed in this episode are personal and do not reflect those of the companies involved. LinksThe Royal Society of Medicine event page for The Unusual Suspects 2022The UK MPS SocietyThe Whose Voice is it Anyway report that Aisha contributed to.The Sickle Cell Society and the APPG&apos;s No-One&apos;s Listening Report  published following inquiry into avoidable deaths and failures of care for sickle cell patients.DeclarationDr Lucy McKay is on the Faculty Steering Committee for Medscape&apos;s Pathways for Rare Disease. She has received an honorarium in order to guide and develop this resource.Sponsorship NoticeThis podcast is brought to you by Medics4RareDiseases. M4RD receives sponsorship from commercial companies. In 2022 this includes:Alexion Therapeutics, Amicus Therapeutics UK Ltd, BioMarin, Bionical Emas, Healx, Kyowa Kirin, Orchard Therapeutics and SOBI.These companies have no editorial control over this or any other M4RD content. Sponsorship does not equate to endorsement of companies or products. Views expressed during this podcast are personal and don&apos;t reflect those of M4RD sponsors.Go here to find out more about how M4RD works with sponsors. Companies have no editorial control over any of M4RD&apos;s activities or content of this podcast.
Episode 59 | Angelica wants to know how her grandmother died. Angelica Gauptman's grandmother died from complications of sarcoidosis.  Angelica is trying to figure out why.  She believes it had something do with the combination of Vitamin D and Prednisone.  To be clear there is no clinical evidence that proves a link.  Angelica is a high school senior with more than your average get up and go.  She has undertaken a survey of Sarc patients, and has gotten the attention of some top level researchers.  Hear her story, and the heartbreaking way her grandmother passed in this edition of the Sarc Fighter Podcast.

Show Notes
Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk
email Angelica agauptman@gmail.com
Remember these hashtags for April!  #WhatIsSarcoidosis #MakeItVisible 
Here is a link to all the activities for April ! https://www.stopsarcoidosis.org/awareness-2022
Universal Barriers Podcast:  https://www.stopsarcoidosis.org/sarc-fighter-podcast/
More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/
Ignore No More https://www.stopsarcoidosis.org/ignore-no-more-foundation-for-sarcoidosis-research-launches-african-american-women-sarcoidosis-campaign/
 
Sarcoidosis Awareness Film: https://www.purpledocumentary.com/
Nourish by Lindsey: https://www.nourishbylindsey.com/
Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751
Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial
Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering
Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy
Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html
Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/
Bonus Episode  Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/
MORE FROM JOHN
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE
More on aTyr Pharma: https://www.atyrpharma.com/
Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!
If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier
The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/
Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  <a href="https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1
Not your usual diabetes Do you know what DIDMOAD stands for? Get your medical dictionary ready...diabetes insipidus, diabetes mellitus, optic atrophy and deafness aka Wolfram Syndrome. This week Lucy is joined by Abby who is a young person living with Wolfram Syndrome, Tracy whose daughter has WS leading her to found Wolfram Syndrome UK with her husband and finally prof Tim Barrett from Birmingham Women&apos;s and Children&apos;s Hospital who is a Children&apos;s Diabetes and Endocrine Consultant.We explore the issues of diagnosis, variability in Wolfram Syndrome, living with complex needs and an invisible condition as well as research in rare disease. We really packed it into this episode!Wolfram Syndrome UKDiabetes GenesOrphanetGene ReviewsClinical trials.govThis activity is partially funded by:Alexion Therapeutics, Amicus Therapeutics UK Ltd, BioMarin, Bionical Emas, Healx, Kyowa Kirin and SOBI.  Sponsorship does not equate to endorsement of any company or its products Go here to find out more about how M4RD works with sponsors. Companies have no editorial control over any of M4RD&apos;s activities or content of this podcast.
Lifelines in Leukodystrophy - a supportive GP and peer support Aged six Alexander developed a squint and hearing loss which didn&apos;t cause too much alarm until he started displaying strange behaviours akin to dementia such forgetting where his bedroom was.  Despite concerns from Alex&apos;s parents, school and grandparents these symptoms were initially dismissed by the local GP. Sadly Alexander was not seen urgently for what would turn out to be a progressive condition that could only be mitigated by timely treatment with a bone marrow transplant.Aged six both Alex and his twin brother, Cameron, were diagnosed with the devastating condition, cerebral leukodystrophy. This is an x-linked condition that they had inherited through their mum, Karen, who was 40 weeks pregnant with her third son at the time.The following events are unimaginable for anyone who&apos;s not lived through it and, Karen says, looking back she also finds it hard to believe what happened. Karen and her husband were given Alexander&apos;s diagnosis on a Friday afternoon and received no support or follow up over the longest weekend of their lives. But their GP stepped up and literally turned up at their house to say he and his colleagues would be there for whatever they needed.This one small act set the tone for a supportive relationship from then on, putting the diagnostic odyssey behind them, and looking to the future as a partnership in the family&apos;s holistic care. This plus peer support through Alex The Leukodystrophy Charity were lifelines and continue to be lifelines for Karen and her family.Links  The Alex Leukodystrophy Charity (Alex TLC)Improving clinical care by learning about lived experience - a talk by Karen Harrison and Dr Alexandra Downes.Sponsorship NoticeThis podcast is brought to you by Medics4RareDiseases. M4RD receives sponsorship from commercial companies. In 2022 this includes:Alexion Therapeutics, Amicus Therapeutics UK Ltd, BioMarin, Bionical Emas, Healx, Kyowa Kirin, Novartis, Orchard Therapeutics and SOBI.These companies have no editorial control over this or any other M4RD content. Sponsorship does not equate to endorsement of companies or products. Views expressed during this podcast are personal and don&apos;t reflect those of M4RD sponsors.Go here to find out more about how M4RD works with sponsors. Companies have no editorial control over any of M4RD&apos;s activities or content of this podcast.
Welcome back! Lucy welcomes you back to The Rare Disease Podcast 4 Medics for season 2! Yay! This episode explains what M4RD has been up to this year so far and some plans for the future.The Unusual Suspects: Rare disease in everyday medicine was on 9th Feb. Soon you will be able to catch up on all the talks via the M4RD Video Library. Make sure you&apos;re on our our mailing list so you don&apos;t miss out.The winner of The Student Voice Prize 2021 was announced in February. Congratulations to the winner and runners up. Check out their essays here and if you didn&apos;t take part in this essay competition in 2021, 2022 can be your year. Check it out in October.The Guardian Rare Disease Day pullout. Find M4RD and Medscape on page 8 &apos;Rare disease education is key to enabling medics to achieve the best for their patients&apos;. You can check out Medscape&apos;s Pathways in Rare Disease here.Co-ordinated care for people affected by rare diseases: the CONCORD mixed-methods study published today!And Lucy thanks M4RD&apos;s sponsors of their 2022 activities:Alexion Therapeutics, Amicus Therapeutics UK Ltd, BioMarin, Bionical Emas, Healx, Kyowa Kirin and SOBI.  Sponsorship does not equate to endorsement of any company or its products Go here to find out more about how M4RD works with sponsors. Companies have not editorial control over any activities or content of this podcast.
Forging a Path in Rare Disease Research, Feat. the Myrovlytis Trust In this episode of the podcast, we meet with our partners at the Myrovlytis Trust to talk about their work in rare disease research.
Keep up with the Myrovlytis Trust and their new initiatives here:
Myrovlytis Trust
www.myrovlytistrust.org
LinkedIn: https://www.linkedin.com/company/the-myrovlytis-trust
Twitter: @Myrovlytis
 
BHD Foundation
www.bhdsyndrome.org
Facebook: https://www.facebook.com/birthoggdube/
Twitter: @BHD_Foundation
BHD Registry: https://birt.healthie.net/register
 
Osteosarcoma Now
www.osteosarcomanow.org
Twitter: @OsteosarcomaNow
Assumptions, amputations and coordinated care Lucy is joined by Helena Baker who was born with a congenital limb defect, worked as a nurse and is the outgoing CEO of Rare Disease Nurse Network.Helena was born with fibular hemimelia - a disorder of limb budding results in a congenital limb malformation characterized by complete or partial absence of the fibula bone combined with dysplasia and hypoplasia of the tibia and dysplasia, hypoplasia or aplasia of parts of the foot (Orphanet).Despite having 100s of operations and having a fairly classical presentation of this condition Helena did not know her diagnosis until aged 49.5 years. Despite the name of the condition not changing her management it meant a lot to her family to be able to understand that nobody was to blame for what Helena had endured her whole life. And not long after Helena had to come to terms with the requirement to amputate her &quot;little foot&quot;.In this episode Lucy and Helena talk openly about how an assumption of knowledge left her in the dark about her diagnosis, what it&apos;s like to say goodbye to your own limb and how coordination of care and better communication could make all the difference to people like Helena. Which is why she is passionate that RDNN become the Macmillan equivalent for rare disease. Sponsorship NoticeThis podcast is brought to you by Medics4RareDiseases. M4RD receives sponsorship from commercial companies. In 2022 this includes: Alexion Therapeutics, Amicus Therapeutics UK Ltd, BioMarin, Bionical Emas, Healx, Kyowa Kirin and SOBI. These companies have no editorial control over this or any other M4RD content. Sponsorship does not equate to endorsement of companies or products. Views expressed during this podcast are personal and don&apos;t reflect those of M4RD sponsors. Go here to find out more about how M4RD works with sponsors. Companies have no editorial control over any of M4RD&apos;s activities or content of this podcast.
Episode 58 | Time to get ready for Sarcoidosis Awareness Month! April is Sarcoidosis Awareness Month!   In this episode of the Sarc Fighter podcast, three leaders from the Foundation for Sarcoidosis Research join me to talk about how the Foundation is working to raise awareness and some money for the fight, and how YOU can participate!  Whether it's taking some extra steps or posting to social media with special hashtags -- it's important to help all of us in the battle for better health care and medications to fight sarc!



Remember these hashtags for April!  #WhatIsSarcoidosis #MakeItVisible 

Here is a link to all the activities for April ! https://www.stopsarcoidosis.org/awareness-2022

Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk

Universal Barriers Podcast:  https://www.stopsarcoidosis.org/sarc-fighter-podcast/

More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/

Ignore No More https://www.stopsarcoidosis.org/ignore-no-more-foundation-for-sarcoidosis-research-launches-african-american-women-sarcoidosis-campaign/

 

Sarcoidosis Awareness Film: https://www.purpledocumentary.com/

Nourish by Lindsey: https://www.nourishbylindsey.com/

Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751

Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial

Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering

Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy

Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html

Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/

Bonus Episode  Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/

MORE FROM JOHN

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!

If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=
S2 E1 - Not your usual diabetes Do you know what DIDMOAD stands for? Get your medical dictionary ready...diabetes insipidus, diabetes mellitus, optic atrophy and deafness aka Wolfram Syndrome. This week Lucy is joined by Abby who is a young person living with Wolfram Syndrome, Tracy whose daughter has WS leading her to found Wolfram Syndrome UK with her husband and finally prof Tim Barrett from Birmingham Women&apos;s and Children&apos;s Hospital who is a Children&apos;s Diabetes and Endocrine Consultant.We explore the issues of diagnosis, variability in Wolfram Syndrome, living with complex needs and an invisible condition as well as research in rare disease. We really packed it into this episode!Wolfram Syndrome UKDiabetes GenesOrphanetGene ReviewsClinical trials.govThis activity is partially funded by:Alexion Therapeutics, Amicus Therapeutics UK Ltd, BioMarin, Bionical Emas, Healx, Kyowa Kirin and SOBI.  Sponsorship does not equate to endorsement of any company or its products Go here to find out more about how M4RD works with sponsors. Companies have no editorial control over any of M4RD&apos;s activities or content of this podcast.
Season 2 Episode 0: Welcome back! Lucy welcomes you back to The Rare Disease Podcast 4 Medics for season 2! Yay! This episode explains what M4RD has been up to this year so far and some plans for the future.The Unusual Suspects: Rare disease in everyday medicine was on 9th Feb. Soon you will be able to catch up on all the talks via the M4RD Video Library. Make sure you&apos;re on our our mailing list so you don&apos;t miss out.The winner of The Student Voice Prize 2021 was announced in February. Congratulations to the winner and runners up. Check out their essays here and if you didn&apos;t take part in this essay competition in 2021, 2022 can be your year. Check it out in October.The Guardian Rare Disease Day pullout. Find M4RD and Medscape on page 8 &apos;Rare disease education is key to enabling medics to achieve the best for their patients&apos;. You can check out Medscape&apos;s Pathways in Rare Disease here.Co-ordinated care for people affected by rare diseases: the CONCORD mixed-methods study published today!And Lucy thanks M4RD&apos;s sponsors of their 2022 activities:Alexion Therapeutics, Amicus Therapeutics UK Ltd, BioMarin, Bionical Emas, Healx, Kyowa Kirin and SOBI.  Sponsorship does not equate to endorsement of any company or its products Go here to find out more about how M4RD works with sponsors. Companies have not editorial control over any activities or content of this podcast.
Episode 55 | Sarc Patient Robin Goble has lost her balance, but she’s fighting to keep her life upright. Sarcoidosis patient Robin Goble once lived an active life that included cycling, hiking and hanging out with her friends while helping to raise two teenage sons.  Then sarcoidosis showed up in her life.  Now she is trying to get past the problems and looking for answers while helping other sarcoidosis patients cope with their problems.



Universal Barriers Podcast:  https://www.stopsarcoidosis.org/sarc-fighter-podcast/

More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/

Ignore No More https://www.stopsarcoidosis.org/ignore-no-more-foundation-for-sarcoidosis-research-launches-african-american-women-sarcoidosis-campaign/

Sarcoidosis Awareness Film: https://www.purpledocumentary.com/

Nourish by Lindsey: https://www.nourishbylindsey.com/

Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751

Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial

Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering

Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy

Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html

Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/

Bonus Episode  Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/

MORE FROM JOHN

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!

If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email me  carlinagency@gmail.com

Shakshuka

Serves 4

Ingredients and Prep


·       3 Tablespoons Extra Virgin Olive Oil

 



·       1 - 4 oz can green chilies
Exciting Rare Disease Developments in the EU, feat. HAE Junior Hello and Happy Rare Disease Day! This week, we discuss some exciting developments concerning rare disease awareness in the EU, specifically in the Czech Republic, with Camelia Isaic and Anežka Dašková of HAE Junior. To learn more about HAE Junior, click here. More information about HAE Junior art exhibition can be found here. Read more about the EU Council Presidency's focus on rare disease for 2022-2022 here. And keep up with Anežka's YouTube Channel here.
Episode 56 | Dr. Shu-Yi Liao wants to know how sarcoidosis moves in the body. Dr. Shu-Yi Liao is trying to answer the questions we all have about sarcoiodosis. How does it move within our bodies? And why do some people get it and others not?  Beyond that, what can be done to stop or prevent the disease?

 



 

Show Notes

More about Dr. Shu-Yi Liao: https://www.nationaljewish.org/doctors-departments/providers/physicians/shu-yi-liao

Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk

Universal Barriers Podcast:  https://www.stopsarcoidosis.org/sarc-fighter-podcast/

More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/

Ignore No More https://www.stopsarcoidosis.org/ignore-no-more-foundation-for-sarcoidosis-research-launches-african-american-women-sarcoidosis-campaign/

 

Sarcoidosis Awareness Film: https://www.purpledocumentary.com/

Nourish by Lindsey: https://www.nourishbylindsey.com/

Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751

Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial

Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering

Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy

Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html

Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/

Bonus Episode  Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/

MORE FROM JOHN

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!

If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/<
Thyroid cancer - Carly Flumer In this episode, I speak to Carly who has been diagnosed with thyroid cancer in both 2017 and 2021. Now in remission, Carly still gets symptoms such as fatigue which can affect her day-to-day life. I talk to Carly about care young people need in hospital, help we need from professionals, support Carly has had for her mental health and advice she would give others with a rare disease.
Episode 55 | Erica Courtenay-Mann Has Sarcoidosis on her Vocal Cords. But she is speaking out! Erica Courtenay-Mann was feeling tired all the time.  Beyond tired.  Fatigued and unmotivated, but nobody understood.  It was the onset of sarcoidosis.  After several attempts for treatment -- her doctor noticed her neck didn't look right.  This is her story.



Show Notes

Universal Barriers Podcast:  https://www.stopsarcoidosis.org/sarc-fighter-podcast/

More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/

Ignore No More https://www.stopsarcoidosis.org/ignore-no-more-foundation-for-sarcoidosis-research-launches-african-american-women-sarcoidosis-campaign/

Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk

Sarcoidosis Awareness Film: https://www.purpledocumentary.com/

Nourish by Lindsey: https://www.nourishbylindsey.com/

Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751

Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial

Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering

Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy

Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html

Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/

Bonus Episode  Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/

MORE FROM JOHN

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!

If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email me  carlinagency@gmail.com
Preview: Rare Disease Week 2022 feat. The EveryLife Foundation for Rare Diseases Britta Dornan and Sarah Tompkins from the EveryLife Foundation for Rare Diseases join us to preview Rare Disease Week 2022. This important event runs from February 22 through March 2 and brings together rare patients from across the U.S. to make their voices heard. To learn how you can get involved, visit the EveryLife Foundation website here, and follow along with #RAREDC2022 on social media.
Bonus Episode | Universal Barriers in Dealing with a Chronic Disease: A Sarcoidosis Perspective In this Bonus Episode of the Sarc Fighter podcast, listen in to the special seminar hosted by The Foundation for Sarcoidosis Research as a physician and two sarc patients look at barriers to health care that cannot be overcome unless we all begin to recognize that they are real and won't go away on their own.  The discussion is led by Sarc Fighter host John Carlin.

 

Show Notes

More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/

Ignore No More https://www.stopsarcoidosis.org/ignore-no-more-foundation-for-sarcoidosis-research-launches-african-american-women-sarcoidosis-campaign/

Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk

Sarcoidosis Awareness Film: https://www.purpledocumentary.com/

Nourish by Lindsey: https://www.nourishbylindsey.com/

Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751

Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial

Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering

Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy

Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html

Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/

Bonus Episode  Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/

MORE FROM JOHN

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!

If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email me  carlinagency@gmail.com
World Cancer Day Patient and Caregiver Forum Cancer is a debilitating disease and can place an enormous physical, emotional, social, and financial burden on the people providing long-term, continuous care for affected patients.
Join us for our third online webinar, in recognition of World Cancer Day in February.
Brought to you by Novartis, Rare Diseases South Africa (RDSA), in association with CANSA, The Breast Health Foundation and Meta Buddies, would like to invite all caregivers, patients and those advocating to bridge the gap for patient care to join us as we discuss these challenges.
Episode 52 | Dr Divya Patel and Novartis are looking for a few good Sarc patients As we begin 2022, there is even more reason for hope.  And on this episode of the Sarc Fighter podcast, Dr, Divya Patel joins me to talk about a clinical trial that could lead to an advancement in the fight against Pulmonary Sarcoidosis.  In this edition of the Sarc Fighter podcast, Dr. Patel explains the clinical trial process and describes the trail she is working on at the University of Florida in connection with the Foundation for Sarcoidosis Research.



Show notes

Learn about the clinical trial from Novartis: https://www.stopsarcoidosis.org/novartis-partners-with-the-foundation-for-sarcoidosis-research-on-a-new-clinical-trial/

Sarcoidosis Awareness Film: https://www.purpledocumentary.com/

Nourish by Lindsey: https://www.nourishbylindsey.com/

Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751

Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial

Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering

Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy

Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html

Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/

Bonus Episode  Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/

MORE FROM JOHN

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!

If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email me  carlinagency@gmail.com
Bridging the Challenges in Cell Therapies, feat. Dr. Brad Heller of Achieve Clinics In this episode, we sit down with Dr. Brad Heller, the founder of Achieve Clinics, to discuss the potential of cell therapies, some of the current challenges and how his organization is tackling these. Learn more about Achieve Clinics here: www.achieveclinics.com.
Episode 54 | Calvin Harris’ lungs are clogged with Sarcoidosis -- but he wants to run a marathon. Calvin Harris lives in New York City, where he balances his time working as a CFO with running and giving back to his community.  He also writes a popular blog called Run Your Own Race.  And that's what he is doing.  In this episode of the Sarc Fighter podcast, Calvin talks about how he deals with all the medications he is taking to keep his sarcoidosis under control, while he trains for a marathon with his sights set on completing the famous New York City marathon in the near future.  



Read Calvin's Blog https://sarcoidosisnews.com/category/columns/run-your-own-race-a-column-by-calvin-harris/

Foloow Calvin on Peloton Calvinfnharris

Follow me on Peloton SarcFighter

Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial

Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering

Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy

Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html

Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/

Bonus Episode  Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/

MORE FROM JOHN

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!

If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email me  carlinagency@gmail.com
Episode 17: Amy Fenton Parker, President and CEO at Batten Disease Support and Research Organization (BDSRA) Why are advocacy and accessibility so important to rare diseases such as Batten Disease? On this week&rsquo;s Few & Far Between podcast episode, Biorasi&rsquo;s Becky Knockemus talks with Amy Fenton Parker, President and CEO at Batten Disease Support and Research Organization (BDSRA).
Episode 53 | Reasons for hope in the fight against Sarcoidosis in 2022 As we begin a new year it's time to take a look at what's ahead in 2022.  Both for ourselves and for the sarcoidosis community at large.  In episode 53 I take a look at what you can do to fight sarc in your own personal battle as you make your new year's resolutions, as well as a look t what researchers, doctors and others are doing to further the fight against the disease, whether it's a new medicine, sarcoidosis awareness or patient outreach.

Show notes

Sarcoidosis Awareness Film: https://www.purpledocumentary.com/

Nourish by Lindsey: https://www.nourishbylindsey.com/

Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751

Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial

Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering

Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy

Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html

Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/

Bonus Episode  Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/

MORE FROM JOHN

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!

If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email me  carlinagency@gmail.com
Episode 12: Effie Parks and Spela Mirosevic Social media platforms and podcasts are spotlighting the untold stories of rare disease patients and their families. Find out more in today's Few & Far Between podcast episode. Biorasi's Becky Knockemus welcomes guests Effie Parks, host of the Once Upon a Gene podcast, and &Scaron;pela Miro&scaron;evič, co-founder and president of the CTNNB1 Foundation.
Episode 13: Kelly Franchetti RN, SVP, Global Head Patient Insights and Strategy at YPrime How has patient advocacy grown to become the driver of rare disease drug development? In today's episode of Biorasi's Few & Far Between podcast, host Marc Gas, PhD, welcomes Kelly Franchetti, RN, SVP at YPrime, to discuss where advocacy is headed and where it needs to go.
Episode 14: Bo Bigelow, Chairman at the Foundation for USP7-Related Diseases, and Trish Flanagan, President at the Yellow Brick Road Project How will a rare disease diagnosis affect your family? Today's Few & Far Between episode features Bo Bigelow, Chairman at the Foundation for USP7-Related Diseases and Co-Founder of DISORDER: The Rare Disease Film Festival, and Trish Flanagan, President at the Yellow Brick Road Project.
Episode 15: Dr. Terry Jo Bichell, Founder and Director of COMBINEDBrain Raising awareness for rare diseases, such as Angelman Syndrome, should not be something parents, patients, and advocates have to do alone. Today's episode of Few & Far Between features Dr. Terry Jo Bichell, Founder and Director of COMBINEDBrain. Biroasi CEO, Chirs O'Brien, is your host for this discussion on biomarkers, treatment, and the rise in community collaboration across rare diseases.
Episode 16: Dr. Alex Adjei, Scientific Advisory Board Member at Biorasi Welcome to a special epsiode of Few & Far Between. Our guest this week is oncologist Dr. Alex Adjei, Scientific Advisory Board Member at Biorasi, and Professor of Oncology and Pharmacology at the Mayo Clinic and Mayo College of Medicine in Rochester, Minnesota. Join our host, Dr. Dipali Patel, for an in-depth discussion on lung cancer - an urgent, global disease that requires empathy and understanding.
Episode 0: Welcome to the Few & Far Between Podcast Welcome to Few & Far Between: Conversations About Rare Disease Research with your host, Chris O'Brien. Episode Zero contains everything you need to know about the podcast and Biorasi's goal to provide an open discussion on trending topics and innovations in rare and urgent disease clinical research.

Episode 1: Paula Evans, CEO and Co-Founder of GeneTx Biotherapeutics On today&rsquo;s podcast, Jimmy El Hokayem, Head of the Neurology and Regenerative Medicine Centers of Excellence and Associate Director of Program Development at Biorasi, will be talking with Paula Evans, CEO and Co-Founder of GeneTx Biotherapeutics.
Episode 2: Julie Walters, Founder and Executive Director of Xperiome/Raremark On today&rsquo;s podcast, host Wayne Bowden, Vice President of Partnerships and Strategy at Biorasi, will be talking with Julie Walters, Founder and Executive Director of Xperiome and the driving force behind Raremark &ndash; an innovative knowledge bank for rare disease patients.
Episode 3: Danielle Drayton, PhD, CEO of REACH Market Research On today&rsquo;s podcast, host Wayne Bowden, Vice President of Partnerships and Strategy at Biorasi, will be discussing insights into market research solutions for rare diseases with Danielle Drayton, PhD, CEO of REACH Market Research.
Episode 4: Marianne Clancy, Executive Director at Cure HHT On today&rsquo;s podcast, host Wayne Bowden, Vice President of Partnerships and Strategy at Biorasi, talks with Marianne Clancy, Executive Director at Cure HHT, about the foundation and their goal of reducing the number of undiagnosed cases of HHT.
Episode 5: Will Maier, VP of Rare Disease, Drug Development Sciences at ICON plc On today&rsquo;s podcast, host Wayne Bowden, Vice President of Partnerships and Strategy at Biorasi, talks with Will Maier, VP of Rare Disease, Drug Development Sciences at ICON plc, about clinical trial engagement in the rare disease patient community.
Episode 6: Dr. Mehool Patel and Dr. Dilhan Weeraratne, IBM Watson Health On today's podcast, host Wayne Bowden joins Biorasi's Omar Ibrahim and IBM Watson Health HOPE team members Dr. Mehool Patel and Dr. Dilhan Weeraratne to discuss glioblastoma and the importance of real-world evidence in clinical research.
Episode 7: US Congressman Gus Bilirakis On today's podcast, US Congressman Gus Bilirakis joins host Wayne Bowden to discuss the importance of rare disease awareness and treatment.
Episode 8: David Rose, Rare Disease Speaker and Advocate On today's podcast, speaker and rare disease advocate David Rose talks with Biorasi's Dr. Raul Silveira about occipital horn syndrome and supporting rare disease patients in the workforce.
Episode 9: Zogenix, Inc.'s Dawn Blessing and J. Michael Graglia from SynGAP Tune in for today's full episode of Few & Far Between. Episode 9 features Biorasi's Becky Knockemus, Zogenix, Inc.'s Dawn Blessing, and J. Michael Graglia from SynGAP Research Fund, discussing the importance of diagnosing #raredisease early and the critical step of sharing study data.
Episode 10: Sharon Terry, CEO Genetic Alliance Why is the sharing of data so crucial to #raredisease research? Tune in for today's full episode of Few & Far Between. Episode 10 features Sharon Terry, CEO at Genetic Alliance and #pseudoxanthomaelasticum (PXE) advocate.
Episode 11: Rebecca Stewart and Nicola Miller from Rare Revolution Magazine How important is transparency to the rare disease community? Today's full episode of Few & Far Between features Biorasi's Lindsey Rios, with guests Rebecca Stewart and Nicola Miller from Rare Revolution Magazine.
The Importance of Getting Involved, Feat. Friedreich‘s Ataxia Advocate Kyle Bryant This week, we talk to patient advocate and FA ambassador for the Friedreich's ataxia Research Alliance, Kyle Bryant, about the importance of getting involved in rare disease communities. To learn more about Friedreich's ataxia, visit curefa.org. Listen to Kyle's podcast, Two Disabled Dudes, at twodisableddudes.com.
Episode 51 | Amy Whaley fights on through a life that was different than she imagined. Amy Whaley is a caregiver.  Her husband, Bobby suffers from a severe case of sarcoidosis.  They are fighting sarc together.  In this episode of the Sarc Fighter podcast, Amy talks about her life, her role as a a caregiver and how life changed shortly after she and Bobby were married.

 



Amy is the first care giver to appear on the Sarc Fighter podcast.  Like all caregivers, she is essential to the life of the person with Sarcoidosis.  Without these loving people's sacrifice, we could not go on with our daily lives.  It's important to note the impact sarcoidosis has not just on the patient, but those around them.

Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial

Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering

Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/

Bonus Episode  Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/

MORE FROM JOHN

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!

If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email me  carlinagency@gmail.com
Episode 9: The Miller family on XP and Xmas (including a quiz!) Eddison is almost 11 and lives with a rare genetics disorder called Xeroderma Pigmentosum. He and his brother talk about growing up in the rare disease community and how they manage to completely avoid the sun and other UV radiation in order to prevent irreversible damage to Eddison. Raife and I touch on &quot;sibling status&quot; and the rather unique position this puts you in. Nicola (Miller of Rare Revolution fame and also mum to these brilliant boys) also joins to give her perspective.Raife and Eddison then quiz the M4RD staff team in a Genetics Xmas quiz!!To see Raife and Eddison in action check then out at RareFEST 2019 organised by Cambridge Rare Diseases Network (CRDN): https://www.youtube.com/watch?v=z0E-poOBKtI&t=390sWatch Nicola&apos;s presentation on the efforts she had to go to in order to get Eddison&apos;s diagnosis:  https://www.m4rd.org/videos/do-you-hear-me-a-parents-perspective-on-rare-disease/Learn more about Xeroderma Pigmentosum: https://www.teddingtontrust.com/Browse Rare Revolution Magazine: https://rarerevolutionmagazine.com/
The Potential of CAR T-Cell Therapy, Feat. Dr. Robyn Stacy-Humphries In this episode, we sit down with Dr. Robyn Stacy-Humphries with Charlotte Radiology. She talks about her diagnosis of diffuse large B-cell lymphoma and treatment with CAR T-cell therapy.

To learn more about CAR T-cell therapy, click here: https://bit.ly/3GIAsAj.

Dr. Stacy-Humphries also recommends a private Facebook group for CAR T-cell patients and their care partners, here: https://bit.ly/3oUvAly
Episode 8: Dr Sondra Butterworth on Inclusivity Dr Sondra Butterworth is from a rare disease family, a carrier of a rare disease and her PhD focused on the quality of life and social support of people living with rare diseases. She talks to Lucy about what it&apos;s like to come from a poor, black, rare disease family in Cardiff and how she&apos;s turning both her personal and professional experiences into real change for rare disease communities.  Sondra is the founder of RareQoL and the Whose Voice is it Anyway campaign - started because some groups within the rare community feel that their voices go unheard #whosevoiceAlso some RuPaul&apos;s Drag Race chat. RuPaul...if you&apos;re listening, we&apos;re your biggest fans.RareQoL: https://rareqol.co.uk/#WhoseVoice report: https://www.m4rd.org/2021/10/26/whose-voice/Narrative Based Medicine review: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5851389/Rita Charon&apos;s Tedx on Narrative Based Medicine: https://www.youtube.com/watch?v=7Uc0jmUkA3ENo-one&apos;s Listening report on Sickle Cell Society&apos;s website: https://www.sicklecellsociety.org/no-ones-listening/Kimberlé Crenshaw&apos;s talk on intersectionality: https://www.ted.com/talks/kimberle_crenshaw_the_urgency_of_intersectionality?language=en
NETS (Neuroendocrine Tumour) & Pituitary Patient and Caregiver Forum Debilitating diseases such as NETS (Neuroendocrine Tumours) and Pituitary Tumours can place an enormous physical, emotional, social, and financial burden on the people providing long-term, continuous care for affected patients.
Join us for our second online webinar, in recognition of National Family Caregivers Month in November.
Rare Diseases South Africa (RDSA) would like to invite all caregivers and patients to join us as we discuss the challenges of being a caregiver, and possible solutions.
Episode 50 | Warren Robinson‘s father died suddenly. And the family struggled to find out why. Warren D. Robinson is a Television Producer with a law degree to boot.  When his father suddenly died from sarcoidosis he decided he wanted to join the fight to help patients suffering from Sarc.  In this episode of the Sarc Fighter podcast, Warren tells the story of how his father showed no signs of the disease until after his sudden death.  Here was a man who lived to help others and always took great care of himself, from getting proper exercise to eating right and everything else healthy people do.  Then one day he just didn't wake up.

 

 



Learn more about Warren and his background as an attorney and producer for Netflix.

https://www.warrendrobinson.com/

 

The back story to Buried by the Bernards -- Warren's show on Netflix https://indianapolisrecorder.com/indianapolis-producer-brought-us-buried-by-the-bernards/

Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial

Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering

Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/

Bonus Episode  Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/

MORE FROM JOHN

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!

If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email me  carlinagency@gmail.com
Episode 7: Top tips for rare disease in GP Lucy takes you through her top 11 tips for suspecting and managing rare disease in a primary care setting. If you&apos;re a GP this episode is for you and after listening you can find all the helpful links and more information in Rare Disease 101.Thank you to Dr Will Evans and Dr Gareth Baynam and the whole rare disease community who have contributed to or inspired this list over the years.Perhaps one day we can get some NICE guidelines or RCGP guidelines for rare disease in general...ReferencesWhelan AJ, Ball S, Best L, Best RG, Echiverri SC, Ganschow P, Hopkin RJ, Mayefsky J, Stallworth J. Genetic red flags: clues to thinking genetically in primary care practice. Prim Care. 2004 Sep;31(3):497-508, viii. doi: 10.1016/j.pop.2004.04.010. PMID: 15331244. Do You hear Me - by Nicola MillerFind Zebra - search engine for rare disease diagnoses Orphanet  - high-quality information on rare diseasesRare Disease UKGene PeopleUniqueSWAN UK - support for this with undiagnosed conditionsEuropean Reference Networks for rare disease (ERNs)
Understanding Clinical Trials What are Clinical trials?
Clinical trials are research studies performed on people that are aimed at evaluating a medical, surgical, or behavioural intervention. They are the primary way that researchers find out if a new treatment, like a new drug or diet or medical device is safe and effective in people. Often a clinical trial is used to learn if a new treatment is more effective and/or has less harmful side effects than the standard treatment.
 
Other clinical trials test ways to find a disease early, sometimes before there are symptoms. Still others test ways to prevent a health problem. A clinical trial may also look at how to make life better for people living with a life-threatening disease or a chronic health problem. Clinical trials sometimes study the role of caregivers or support groups.
 
The aim of the webinar is to help the patient community understand clinical trials, how they come about, how patients can keep abreast of what it taking place and how they can participate. This webinar will be a guided discussion where patients can ask questions and get a better understanding of the process.
Episode 6: Dr Shanali on identity Dr Shanali Perera is a contemporary artist, educator, writer and retired clinician. She lives with a rare condition called vasculitis - a rheumatological condition that first presented when Shanali, herself, was training as a Rheumatologist.In this episode we discuss identity. How our different identities interplay with each other in different environments. How Shanali felt as a patient, rather than a doctor in her speciality and what he learned from this experience. How our identities are affected by illness and how the little ways we express ourselves help us hold on to who we are during turbulent times.There is a lot to learn from Shanali and this episode just scratches the surface.Shanali&apos;s website in which you can see her art: www.changinglanes.meSee Me Hear Me campaign by Vasculitis UK: https://www.vasculitis.org.uk/news/see-me-hear-meDigital booklet about ANCA-associated vasculitis: https://online.flippingbook.com/view/730582/
Episode 49 | Adam Bernardi has sarc in all the wrong places. Adam Bernardi has a great job working in Hollywood.  He's met some big name celebs, and even worked with them.  He's edited or worked on projects you've likely seen.  But none of that could prevent sarcoidosis from attacking his nervous system. 



In Episode 49 of the Sarc Fighter podcast, Adam shares the story of how difficult it was for doctors to diagnose his sarcoidosis, and how the disease has shut down parts of his body that at times can cause embarrassing situations.  Thanks to Adam for an honest and forthright discussion.

Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial

Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering

Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/

Bonus Episode  Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/

MORE FROM JOHN

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!

If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email me  carlinagency@gmail.com
Episode 5: Diagnosed during an OSCE Dan Jeffries was born with a rare condition called Wyburn-Mason syndrome that has left him blind in one eye since birth. It was thanks to this condition he was invited to volunteer as a model patient for an Observed Structured Clinical Examination (OSCE) for ophthalmology trainees. Only one trainee correctly identified the aterio-venous malformation in his eye but all six diagnosed him with an entirely new condition....Dan is an author, musician and Head of Online Learning at a veterinary education company. He also has two rare conditions and is a Trustee for Medics4RareDiseases. Creator of Rare Disease 101 and generally very useful and great person to know.Rare Disease 101: Everything you need to know about rare disease learn.m4rd.orgMe, Myself and Eye book: https://memyselfandeye.co.uk/Acrotales podcast: https://acrotales.com/episodes/The Pituitary Foundation: https://www.pituitary.org.uk/
Ataxia - Tallulah Clarke In this episode, I talk to Tallulah about her rare disease Ataxia. We chat about how it took nearly 10 years for Tallulah to be diagnosed and how it affects her day-to-day. We discussed the importance of accessibility and some challenges that Tallulah has faced with this. Degenerative conditions can be tough, especially with a global pandemic in the way. Tallulah raises awareness about how this has affected her and how as a young person, she wants to be as independent as possible and not let anything stop her.
Not Just Surviving, But Thriving With Pheo vs. Fabulous In this episode, we speak with Miranda Edwards, the voice behind Pheo vs. Fabulous about her journey with pheochromocytoma. That's an ultra-rare endocrine tumor that produces adrenaline, characterized by symptoms such as rapid heartbeat and dangerously high blood pressure, among others. Topics discussed: self-advocacy, the importance of awareness, living with a terminal diagnosis and more. Learn more about Miranda and her journey by visiting her website, PheoVsFabulous.com. You can also find out more about pheochromocytoma by visiting the Pheopara Alliance at PheoPara.org.
Episode 4: Growing up with an undiagnosed condition Sarah Lippett spent eleven years suffering with symptoms from an unknown condition, until she was diagnosed with the rare disease, Moyamoya, at the age of 17. In November 2019 she published her beautiful graphic memoir, A Puff of Smoke, which tells her story using the power of the sequential narrative. Here&apos;s a throwback to Lucy&apos;s interview with her ahead of the launch. Once you&apos;ve finished listening watch the follow up video &apos;Living With It&apos; about what life is like after diagnosis. Sarah spoke to Lucy while shielding in her flat in Edinburgh during the first UK lockdown. She talks about the pandemic and her kidney disease relapse.https://www.youtube.com/watch?v=6m-vSThMtjk&t=1sSarah&apos;s website: http://www.crayonlegs.com/When Lucy and Sarah were featured on Woman&apos;s Hour: https://www.bbc.co.uk/food/programmes/m000b4whThank you Sarah for being interviewed and Kate Allnutt for doing the editing of my very first interview - Lucy xox
Episode 48 | Dr. Jinny Tavee is a neurosarcoidosis specialist with a unique approach to fighting the disease Dr. Jinny Tavee, the Chief, Division of Neurology at National Jewish Health clinic in Denver is one of the leading experts in the United States when it comes to neurosarcoidosis.  Neuro sarc only affects a small percentage of all sarcoidosis patients, but her approach for treatment extends beyond those who are unfortunate enough to have sarc in their brain or spinal cord.  In Episode 48 of the Sarc Fighter Podcast, Dr. Tavee delves into how your entire body, mind, and spirit can be engaged to help you overcome sarcoidosis-related issues.



More About Dr. Jinny Tavee https://www.nationaljewish.org/doctors-departments/providers/physicians/jinny-tavee

See a Talk Jinny gave for the Foundation for Sarcoidosis Research https://youtu.be/zzOT-tpsUBQ

Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial

Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering

Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/

Bonus Episode  Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/

MORE FROM JOHN

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!

If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email me  carlinagency@gmail.com
Episode 3: Doctors are patients too When Dr Genevieve noticed some problems with her grip and speech she put it down to stress. GP is a high pressured environment and like many doctors, she had a tendency to not worry too much about her own health. She was the first in her family to be diagnosed with myotonic dystrophy, a rare genetic condition, but she wasn&apos;t the last.In this interview with Dr Lucy McKay from Medics4RareDiseases, Dr Genevieve talks about her diagnosis and how it has impacted her as a patient and as a doctor.She has learned a lot and we can all learn a lot from her.This interview was recorded to mark the first ever International Myotonic Dystrophy Awareness Day. Learn more here: www.myotonic.org.ukThis interview is for driving awareness. It is not for formal education or medical consultation purposes. Find out more about the awareness raising efforts of M4RD, including who our commercial sponsors are at www.m4rd.org
Episode 2: The Student Voice Prize 2021 The Student Voice Prize is an annual, international essay competition that raises the profile of rare disease within the medical field, particularly with medical students, nurses and scientists who may have never come across considering rare disease as one field during their training.Findacure and Medics4RareDiseases host the competition together and the winner is published in The Orphanet Journal of Rare Diseases!In this episode Lucy from M4RD and Philippa from Findacure talk to one of last year&apos;s winners - Caitlyn Taylor, 5th year medical student at The University of Edinburgh. We discuss why she entered, her essay and a recent remake of a Rembrandt painting she posed for...The Student Voice Prize - submit your essay before 17th November! https://www.findacure.org.uk/student-voice-prize/Caitlyn&apos;s essay - https://www.findacure.org.uk/wp-content/uploads/2021/03/Caitlyn-Taylor-Essay.pdfThe Rembrandt painting - https://www.blog-lwinram.com/2020/09/23/edinburgh-seven/
Episode 1: Not your usual heart attack Today we will be exploring how people with classic heart attack symptoms are not being recognised as having heart attacks because they don&apos;t meet the usual patient profile. I will be joined by representatives from BeatSCAD, Karen and Sarah, plus Dr Adlam, Consultant Cardiologist to raise awareness of spontaneous coronary artery dissection (SCAD) and discuss how the unmet needs in this one condition are reflective of many in the rare disease community.Please note that this interview is for awareness driving only. M4RD has commercial sponsors that have not editorial control over this or any of its activities. Find out more at www.m4rd.org/sponsors
Episode 0: An Introduction to The Rare Disease Podcast 4 Medics Dr Lucy McKay, CEO of Medics4RareDisease, provides some background into the world of rare disease and some info one what you can expect from this podcast.
Hanging Onto Hope in the Face of AML In this episode, we speak with Dave Cade, an acute myeloid leukemia patient who is in remission after an experimental treatment. We discuss keeping hope in the face of a tough diagnosis and the importance of support. Learn more about AML here.
Episode 47 | Women of Color Fight Back! African American Women are three times more likely to suffer from sarcoidosis than whites, and their sarcoidosis mortality rate is 13 times higher than Caucasians and 1.5 times higher than African American men.

Why?

What is going on with women of color that isn't happening in other groups?  Why are they having a harder time than everyone else.  There are multiple reasons, and the Foundation for Sarcoidosis Research is hoping to get to the bottom of it. 

FSR has created the Women of Color Patient Advisory Committee and the Women of Color Clinical Advisory Committee to address these concerns.  Starting in 2021 these patients, clinicians and researchers are going to be looking at what's behind these terrible outcomes for these women.

Join me in Episode 47 as Sarc patient Chasta Posey and Dr. Ennis James of the Medical University of South Carolina take a deep dive in the causes and effects of the way African American women are treated.



The news release from the Foundation for Sarcoidosis Research has more startling statistics on the impact on African American Women.  https://www.stopsarcoidosis.org/ignore-no-more-foundation-for-sarcoidosis-research-launches-african-american-women-sarcoidosis-campaign/

Hear more about Chasta's story! https://www.podbean.com/ew/pb-n9ky6-d8615a

Meet Dr. Ennis James: https://youtu.be/SaKMLmfYmCA

Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial

Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering

 

Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/

Bonus Episode  Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/

MORE FROM JOHN

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!

If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email me  carlinagency@gmail.com
Congenital heart defect - Liam Garay Welcome to the first episode of season 2! In this episode I talk to Liam about his congenital heart defects and the impact this can have on his mental health. We share some mental health facts and figures and raise awareness of the importance around physical and mental health support
The Importance of Connection With Jordan‘s Guardian Angels In this episode, we discuss an ultra-rare genetic condition with Carole Bakhos of Jordan's Guardian Angels. To find out more about Jordan's Syndrome and how you can support this important nonprofit, check out their website here. Their podcast, "A Rare Reality," is available here or on your favorite podcast platform.
Understanding Section 21 and off-label products Rare Diseases South Africa, in association with Path, SAHPRA, and SAHTAC, will be hosting a webinar on Thursday 7th October on Understanding Section 21 and Off-label Products.
This webinar is aimed at educating the public on the use of Off-Label Medication, Education on the SAHPRA process, and medical regulations to enhance public understanding and mitigating confusion regarding the use of unregistered medication.
Speakers include:
•Kelly du Plessis – Section 21 and off-label medication – the patient experience on the ground
•Dr Shyamli Munbodh – The purpose of Section 21 and the application process. Off-label medication usage – what you need to know and understand.
We encourage all our community members and healthcare users to attend this informative webinar. We look forward to seeing you online and engaging on this important topic.
Episode 46 | Lisa Pflug is early in her journey with neurosarcoidosis, but already suffering the effects. Lisa Pflug's hand started shaking one day and she couldn't make it stop.  For months neither she nor her doctors could explain it.  Then they started looking at her spinal cord, and they found the problem.

In this Episode of the Sarc Fighter Podcast, Lisa shares the story of her journey through sarcoidosis, from her shaking hand to life on prednisone and hopefully a better life thanks to Remicade.



Lisa is right handed and she is thankful sarcoidosis has only affected her left hand, allowing her to pursue her passion as a painter.  Here is one of her creations -- a flying egret.



Promised links are below.  But here are a couple of photos from my trip to Zion, Grand Canyon, and Bryce National Parks.



 

 

Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial

Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering

 

Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/

Bonus Episode  Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/

MORE FROM JOHN

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!

If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email me  carlinagency@gmail.com

S
Getting to know ITP & MF A special thank you to Dr Ashmore, Corno, Danelle and Cole for speaking in this webinar and helping to create awareness.
Awareness and Improvement: Discussing Narcolepsy With a Sleep Medicine Doctor In this episode, we discuss narcolepsy and the results of a recent clinical trial investigating FT218 for efficacy in treating excessive daytime sleepiness and cataplexy. Dr. Asim Roy, the medical director of the Ohio Sleep Medicine Institute and a lead investigator in the REST-ON study, joins us.

To learn more about FT218 and the clinical trials, visit www.restore-narcolepsy-study.com.
Episode 45 | Fantastic results from trial of new sarcoidosis drug from aTyr Pharma Atyr Pharma has just released the results of a patient trial of a drug called aTyr 1923.  The drug had shown early promise, and the trial more than verified that thinking.

Atyr 1923 Not only allowed patients to dose down or even off of Prednisone, but it actually improved lung function in patients -- something that is rarely if ever accomplished.

In this episode of the Sarc Fighter podcast, aTyr President and CEO, Dr. Sanjay Shukla joins me to talk about the results, the meaning behind the trial and what happens next, as this leading edge science advances to the next stage, and hopefully to the point where it becomes a solution for so many people in the Sarcoidosis space.



Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial

Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering

 

Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/

Bonus Episode  Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/

MORE FROM JOHN

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!

If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email me  carlinagency@gmail.com

Sarc Fighter Facebook Page  https://www.facebook.com/SarcFighter/

Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/
A Lifetime of Research with Dr. Cannon of the Periodic Paralysis Association In this episode, we discuss a condition called periodic paralysis with Dr. Steve Cannon, professor and chairman of the department of physiology at the David Geffen School of Medicine at UCLA and medical advisor with the Periodic Paralysis Association. Periodic Paralysis is a rare genetic disorder that is characterized by attacks of paralysis, weakness, and stiffness in the body. To learn more about this condition, visit the Periodic Paralysis Association here.
Episode 44 | Brandi Cleaver faces down what may be a terminal case of sarcoidosis. Living in a rural area can be tough when you are faced with a rare disease like sarcoidosis.  So Imagine living in remote North Dakota and trying to find a diagnosis and medical care.  That is the case for Brandi Cleaver.  At one point she and her friends held fundraisers in order to get her to Cleveland and the care she needed.  At one point in her life Brandi was one of those people who showed up on horseback during search and rescue operations.  Now, she is stuck at home most of the time, practicing self care and raising her son.  In this episode she shares her story of fighting back against sarcoidosis.

 



John's Moose Encounter!  https://youtu.be/fXXTdVo90Zg (You'll enjoy this

Juliet's Story: https://beatsarc.podbean.com/e/juliet-coffer-can-barely-walk-without-losing-her-breath-but-she-was-determined-to-step-up-to-fight-sarcoidosis/!)

Meet Joe McCorry: https://beatsarc.podbean.com/e/episode-4-joe-mccorry-has-been-fighting-sarcoidosis-for-a-long-long-time/

 

Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/

Bonus Episode  Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/

MORE FROM JOHN

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!

If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email me  carlinagency@gmail.com

Sarc Fighter Facebook Page  https://www.facebook.com/SarcFighter/

Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/
Building the Connections with the SYNGAP Research Fund This week, we speak with Mike Graglia from the SYNGAP Research Fund about their efforts in advocating for this underdiagnosed genetic condition. Find out more about SYNGAP and the SRF at SyngapResearchFund.org.
Episode 43 | Joe McCorry has been fighting Sarcoidosis for a long, long time. Maybe we could call it "sarcoidosis creep."  For people who have chronic sarc, it seems like if it doesn't get better, it slowly gets worse.  When that happens, people's lives change.  Their activities become more and more curtailed.  Usually because their health is declining.  That's what happened to Joe McCorry of Chicago.  In this episode of the Sarc Fighter podcast, Joe talks about how sarc has taken over different organs in his body and how it's forced him to slow his life to a crawl.



The latest blog from Charlton Harris: https://sarcoidosisnews.com/2021/08/23/dont-have-anything-prove-with-sarcoidosis/

Charlton's Interview on the Sarc Fighter Podcast: https://beatsarc.podbean.com/e/sarc-fighter-charlton-harris-is-having-a-hard-time-breathing-a-really-hard-time/

John's Moose Encounter!  https://youtu.be/fXXTdVo90Zg

Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/

Bonus Episode  Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/

MORE FROM JOHN

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!

If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email me  carlinagency@gmail.com

Sarc Fighter Facebook Page  https://www.facebook.com/SarcFighter/

Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/
Episode 42 | Juliet Coffer can barely walk without losing her breath. But she was determined to step up to fight sarcoidosis. Juliet Coffer lives in a cottage in the UK.  By her description, it is a small home, yet her lungs only permit her to take a few steps at a time without running out of oxygen.  In this episode, Juliet describes what it is like to push on when every breath seems to be an adventure.  But not only that -- she has found a way to get around her house in a way that has raised tens of thousands of dollars to fight the disease.

Learn more about her remarkable spirit in this episode of the Sarc Fighter Podcast.

From Juliet:

Just Giving page for details of my fundraising, if anyone would like to donate to my campaign for SarcoidosisUK: https://www.justgiving.com/fundraising/julietcoffer

Interview with BBC local TV where they came to film the last 100m of my walk: https://www.youtube.com/watch?v=KNZlMiNV2z4

SarcoidosisUK ‘ Patient Story’ and the full story behind why I did my fundraising: https://www.sarcoidosisuk.org/juliet-coffer-patient-story/

I can be contacted on

Twitter:  @julietcoffer

Instagram: juliet_coffer

Facebook: Juliet Coffer (I believe there’s only one of me!)

ohn's Moose Encounter!  https://youtu.be/fXXTdVo90Zg

Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/

Bonus Episode  Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/

MORE FROM JOHN

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!

If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email me  carlinagency@gmail.com

Sarc Fighter Facebook Page  https://www.facebook.com/SarcFighter/

Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/
Periventricular Nodular Heterotopia (X linked) - Georgie Peterson In this episode Georgie tells me about her rare disease Periventricular Nodular Heterotopia. We discuss how illness can affect relationships with family and friends, how a life changing diagnosis can impact someone’s life as well as how rare disease can impact mental health and changes Georgie would like to see to ensure a person’s mental health is cared for. Georgie has written a book called ‘Freaks Like Me’ which has an honest account of what Georgie faces with her condition. You can buy it now! https://www.amazon.co.uk/Freaks-Like-Me-Georgina-Peterson/dp/1788785959
Episode 41| Dr. Matt Baker is researching a promising new drug to fight sarc at Stanford University. Dr. Matt Baker at Stanford University is studying Sarilumab also known as KEVZARA as a treatment for sarcoidosis.  Sarilumab is already approved for rheumatoid arthritis, but it's anti-inflammatory properties make it a great candidate to treat sarcoidosis as well.

In this interview, Dr. Baker explains in layman's terms how Sarilumab works in your body to keep the autoimmune process from creating inflammation, which in turn causes many of the problems people suffer with sarcoidosis.



Matt Baker's bio and info: https://profiles.stanford.edu/matthew-baker

Matt's research on Sarcoidosis: https://www.stopsarcoidosis.org/sarilumab/

 

John's Moose Encounter!  https://youtu.be/fXXTdVo90Zg

Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/

Bonus Episode  Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/

 

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!

If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email me  carlinagency@gmail.com

Sarc Fighter Facebook Page  https://www.facebook.com/SarcFighter/

Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/
Making the "Invisible," Visible With Journalist Karina Sturm In this episode, we speak with journalist and filmmaker Karina Sturm about Ehlers-Danlos Syndrome and disability awareness and inclusion. To learn more about Karina, or to check out her documentary, "We Are Visible," visit her website here.
Episode 41 | Writer Rebecca Stanfel is bringing the sarcoidosis message to the masses. And, man, does she know the story. Rebecca Stanfel has been dealing with sarcoidosis for 17 years.  Not just dealing with it, but at times, barely hanging on.  All of this from a once world class cyclist, wife and mother who happens to have an amazing gift for writing.  Her essays on living with sarcoidosis while struggling with the pandemic have been published in the Washington Post and HuffPost. 



During the pandemic, Rebecca moved away from her family for eight months -- to ensure her immune system would not be compromised by her husband and son who were not able to quarantine simply due to their daily responsibilities.  Rebecca has had such a tough run with sarc, to the point she has been bed-ridden for months at a time, that she could not risk getting COVID-19.  In this episode of the Sarc Fighter Podcast, Rebecca talks about her writing, her decision to move out and the years-long struggle she has faced as sarcoidosis overtook much of her body.

Washington Post Essay: https://www.washingtonpost.com/health/pandemic-requires-patience-time-will-pass/2021/04/16/a75cdeea-9631-11eb-b28d-bfa7bb5cb2a5_story.html

Huff Post Essay: https://www.huffpost.com/entry/immunocompromised-covid-vaccine-cdc_n_60b043c9e4b04ddf13ebecd6

Rebecca's Blog Chronic Town: https://chronicville.wordpress.com/

Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/

Bonus Episode  Sarcoidosis and Prednisone https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!

If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email me  carlinagency@gmail.com

Sarc Fighter Facebook Page  https://www.facebook.com/SarcFighter/

Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/
Cure Mito Foundation: The Importance of Patient Registries In this episode, we discuss Leigh Syndrome, a rare mitochondrial disease, with Kasey Woleben and Sophia Zilber of the Cure Mito Foundation. We talk about the importance of patient registries and how rare disease patients and families band together to work for a better future. To learn more about Leigh Syndrome and the Cure Mito Foundation, visit their website at www.curemito.org.
Episode 39 | Dr. William Damsky may be on the verge of a sarcoidosis breakthrough. Dr. William Damsky, MD, Ph.D.,  is a leading researcher at Yale University.  He is pioneering a study using the off label drug, Xeljanz (say:ZEL-janz) to fight sarcoidosis of the skin, with so far - great success.  Damsky and his team have been able to make disfiguring cases of dermatological sarcoidosis disappear in a handful of cases.  They are now moving ahead with a more robust clinical trial to see just how promising this treatment may be -- perhaps for sarcoidosis in other parts of the body as well.



In this Episode of the Sarc Fighter podcast, Dr. Damsky explains in easy to understand terms how this drug works within the body to block the autoimmune response behind sarcoidosis. 

William Damsky MD, PhD Bio  https://medicine.yale.edu/profile/william_damsky/?tab=bio

Xeljanz https://www.xeljanz.com/

Background on the study at Yale School of Medicine https://medicine.yale.edu/news-article/yale-experts-treat-severe-disfiguring-sarcoidosis-with-novel-therapy/

Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/

Bonus Episode  Sarcoidosis and Prednisone https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!

If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email me  carlinagency@gmail.com

Sarc Fighter Facebook Page  https://www.facebook.com/SarcFighter/

Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/
37 Years of Research With the TSC Alliance In this episode, we speak with Kari Rosbeck of the TSC Alliance to discuss tuberous sclerosis syndrome, the importance of research and how the organization adapted during the COVID-19 pandemic.

Learn more about tuberous sclerosis complex and the TSC Alliance here.
LIVE episode with Katie Callaghan! We recorded this live from the Stereo app! In this episode you can listen to some more of the day-to-day challenges people with chronic illness and rare disease can face such as challenges in employment, University, telling new people about your illness and more.
Episode 38 | Sarcoidosis is world wide. How they fight it in the UK Sarcoidosis UK is doing its best to fight sarc in the United Kingdom.  The organization is small but mighty and looking to grow its influence as it raises awareness about the disease and reaches out to patients to offer them help in a confusing sarcoidosis world.

In Episode 38 of the Sarc Figher podcast, Leo Casimo, Senior Executive, joins in from London to talk about the efforts of Sarcoidosis UK , and how patients there are coping with the disease while tryng to help one another and raise awareness for research.

Here's a link to Juliet's fundraiser and story: https://www.justgiving.com/fundraising/julietcoffer

Sarcoidosis UK https://www.sarcoidosisuk.org/

Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

Charlton's blogs https://sarcoidosisnews.com/category/no-tears-for-sarcoidosis-a-column-by-charlton-harris/

My probiotic Just Thrive https://justthrivehealth.com/products/probiotic?variant=25256665251940

The Omega 3 product I have been taking https://www.nordicnaturals.com/consumers/

Just so you know I am not affiliated with any of these companies in any way.  I talked about these products in the podcast so I'm sharing my information with you.  I buy them on line or in the store and pay full price!

Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!

If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier

You can listen on You Tube as well.  https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email me  carlinagency@gmail.com

Sarc Fighter Facebook Page  https://www.facebook.com/SarcFighter/

Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Friedreich's ataxia - Georgia Hart In this episode Georgia shares her experience with Friedreich's Ataxia which is a genetic rare disease affecting approximately 1 in 50,000 people. Georgia talks about role models in the media and why there needs to be more disability respresentation in the media as well as how this interest has motivated Georgia to be an advocate. We also discuss Georgia's time at University and some tip tops for people with illness who are wanting to study.
Staying Strong and Pressing On With the Alagille Syndrome Alliance In this episode, we sit down with Cher Bork and Roberta Smith of the Alagille Syndrome Alliance. We discuss how to support people with this rare condition and preview some upcoming events. To learn more about the Alagille Syndrome Alliance and its efforts visit www.alagille.org.
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