Episode 173 | New hope for rare disease research

The Foundation for Sarcoidosis Research is sharing a new development from the FDA that will make it easier for researchers to work in the rare disease space.  Also, a listener from New Zealand wonders if a recent Nobel Prize was granted to researchers working on Sarcoidosis, while another study ties sarcoidosis to liver damage.     Show Notes:    More on the Nobel Prize winners: https://apnews.com/article/nobel-prize-medicine More on the mouse model for sarcoidosis: https://sarcoidosisnews.com/news/1st-cardiac-mouse-model-develop- treatments-mtorc1-protein/ More on lingering heart problems from Sarcoidosis: https://sarcoidosisnews.com/news/lingering- heart-inflammation-tied-cardiac-sarcoidosis-relapse-risk/ More on Liver damage from Sarcoidosis: https://sarcoidosisnews.com/news/large-study-ties-sarcoidosis-risk-permanent- liver-scarring   FSR helps patients navigate insurance:  https://www.stopsarcoidosis.org/foundation-for-sarcoidosis-research-announces-new-partnership-with-patient-advocate-foundation-to-expand-insurance-and-disability-support-for-sarcoidosis-patients/ Sarcoidosis News Pulmonary relapse report: https://sarcoidosisnews.com/news/relapse-common-pulmonary-sarcoidosis-treatment-changes/ MORE FROM JOHN: Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ 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  [email protected] #sarcoidosis #sarcoidosisawareness #kidney #dermatology #cardiacsaroidosis

Jeanne Parson lives in California where she is fighting pulmonary sarcoidosis as well as cystic fibrosis.  It can't be fun.  She started noticing there was a problem where her daily walks became difficult.  Now she spends as much time managing her healthcare as she does walking -- or playing in a band which she also loves. Show Notes:    Microbe sarcoidosis study: https://sarcoidosisnews.com/news/study-challenges-theory-microbes-sarcoidosis-cause/ Support Brett for the NYC marathon: https://stopsarcoidosis.rallybound.org/2026-team-rally-for-sarc/BrettWittner Meet all the FSR runners for 2026: https://www.stopsarcoidosis.org/nyc-marathon/ FSR Sarcoidosis Summit: https://www.stopsarcoidosis.org/philadelphia-summit/ FSR helps patients navigate insurance:  https://www.stopsarcoidosis.org/foundation-for-sarcoidosis-research-announces-new-partnership-with-patient-advocate-foundation-to-expand-insurance-and-disability-support-for-sarcoidosis-patients/ Sarcoidosis News Pulmonary relapse report: https://sarcoidosisnews.com/news/relapse-common-pulmonary-sarcoidosis-treatment-changes/ MORE FROM JOHN: Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ 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  [email protected] #sarcoidosis #sarcoidosisawareness #kidney #dermatology #cardiacsaroidosis                           

Promising new research identifies three genes that may play a role in why people do or do not get sarcoidosis.  Also a look at why hard work makes us feel better going all the way back to the old world philosophers, and how that might help you in your battle with sarcoidosis.   Show notes:   The new Sarcoidosis Study from Sarcoidosis News: https://sarcoidosisnews.com/news/study-identifies-three-genes-influence-sarcoidosis-risk/ Support Brett for the NYC marathon: https://stopsarcoidosis.rallybound.org/2026-team-rally-for-sarc/BrettWittner Meet all the FSR runners for 2026: https://www.stopsarcoidosis.org/nyc-marathon/ FSR Sarcoidosis Summit: https://www.stopsarcoidosis.org/philadelphia-summit/ FSR helps patients navigate insurance:  https://www.stopsarcoidosis.org/foundation-for-sarcoidosis-research-announces-new-partnership-with-patient-advocate-foundation-to-expand-insurance-and-disability-support-for-sarcoidosis-patients/ Sarcoidosis News Pulmonary relapse report: https://sarcoidosisnews.com/news/relapse-common-pulmonary-sarcoidosis-treatment-changes/ MORE FROM JOHN: Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ 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  [email protected] #sarcoidosis #sarcoidosisawareness #kidney #dermatology #cardiacsaroidosis                   

Brett Wittner has run a lot of marathons.  A lot.  But when her tried to make a comeback something was wrong with his lungs.  Scans showed it was sarcoidosis.  Yet, he is running the New York City Marathon as a fundraiser for the Foundation for Sarcoidosis Research. Listen in as he shares his story as a runner and sarcoidosis patient. Show notes:   Support Brett for the NYC marathon: https://stopsarcoidosis.rallybound.org/2026-team-rally-for-sarc/BrettWittner   Meet all the FSR runners for 2026: https://www.stopsarcoidosis.org/nyc-marathon/   FSR Sarcoidosis Summit: https://www.stopsarcoidosis.org/philadelphia-summit/ FSR helps patients navigate insurance:  https://www.stopsarcoidosis.org/foundation-for-sarcoidosis-research-announces-new-partnership-with-patient-advocate-foundation-to-expand-insurance-and-disability-support-for-sarcoidosis-patients/ Sarcoidosis News Pulmonary relapse report: https://sarcoidosisnews.com/news/relapse-common-pulmonary-sarcoidosis-treatment-changes/ MORE FROM JOHN: Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ 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  [email protected] #sarcoidosis #sarcoidosisawareness #kidney #dermatology #cardiacsaroidosis                

Kimberly Cleary lives in Chicago, where she is dealing with severe pulmonary Sarcoidosis.  After a long path to diagnosis, she is working with her medical team to find a treatment that works for her.  It has't been easy.   Show Notes: Show notes:   FSR Sarcoidosis Summit: https://www.stopsarcoidosis.org/philadelphia-summit/ FSR helps patients navigate insurance:  https://www.stopsarcoidosis.org/foundation-for-sarcoidosis-research-announces-new-partnership-with-patient-advocate-foundation-to-expand-insurance-and-disability-support-for-sarcoidosis-patients/ Sarcoidosis News Pulmonary relapse report: https://sarcoidosisnews.com/news/relapse-common-pulmonary-sarcoidosis-treatment-changes/ MORE FROM JOHN: Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ 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  [email protected] #sarcoidosis #sarcoidosisawareness #kidney #dermatology #cardiacsaroidosis          

Susan Smith has cardiac Sarcoidosis.  One day she was in spin class, and all of a sudden her life went into a spin.  Sarcoidosis has raised its ugly head, and now she is taking things day by day as she works with her medical team to find a solution to what seems to be a worsening problem. Susan contacted me following the release of the podcast saying she wished she had been more specific with respect to some of her diagnosis.  She asked me to pass along the following information: I wish I had made clear that I am being evaluated for autonomic small fiber neuropathy and my symptoms not only include weird sensations in the feet, dry eyes, and body temperature dysregulation but also bloatedness after eating and drinking, cold intolerance in my fingers and toes and sexual dysfunction.    Also, I wish I had explained more about how it was evident to me that I had cardiac sarcoidosis before getting the results of my first PET and my first cardiac MRI. I had had two 30 minute long episodes of ventricular tachycardia, a month apart. The second one came after being loaded up with Amiodarone at the hospital and beginning a daily dosage at home. Amiodarone is the most potent anti-arrhythmia drug available. The second episode of ventricular tachycardia did not result in my ICD firing because the Amiodarone had dampened the v-tach, making the heart beat less fast. The settings on my ICD were for a higher grade v-tach. The ER doctor shocked my heart back into rhythm. I remember it well because he did not sedate me. After the second prolonged v-tach, my primary cardiologist said to me that there must be “Infiltrations” in my heart. He threw out the word “sarcoidosis.” I read about cardiac sarcoidosis and compared my symptoms to those associated with other cardiomyopathies. It seemed to me that it was highly likely that I had cardiac sarcoidosis.    Show notes:   Johns Hopkins Sarcoidosis Event: https://aspire.hopkinsmedicine.org/project/49528 FSR helps patients navigate insurance:  https://www.stopsarcoidosis.org/foundation-for-sarcoidosis-research-announces-new-partnership-with-patient-advocate-foundation-to-expand-insurance-and-disability-support-for-sarcoidosis-patients/ Sarcoidosis News Pulmonary relapse report: https://sarcoidosisnews.com/news/relapse-common-pulmonary-sarcoidosis-treatment-changes/ MORE FROM JOHN: Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ 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  [email protected] #sarcoidosis #sarcoidosisawareness #kidney #dermatology #cardiacsaroidosis                      

Tony Haskel is fighting cardiac sarcoidosis.  He has been battling the disease since 2022, and it's been a long road back.  In fact, he will tell you he's nowhere close to where he once was or where he wants to be.  Tony is a return visitor to the podcast, having first joined me in March of 2023.  We both felt like it was time for an update.   SHOW NOTES FSR helps patients navigate insurance:  https://www.stopsarcoidosis.org/foundation-for-sarcoidosis-research-announces-new-partnership-with-patient-advocate-foundation-to-expand-insurance-and-disability-support-for-sarcoidosis-patients/    Sarcoidosis News Pulmonary relapse report: https://sarcoidosisnews.com/news/relapse-common-pulmonary-sarcoidosis-treatment-changes/ John's story from the White House on Col. John Ripley: https://www.wsls.com/video/news/2026/06/19/col-john-ripley-of-radford-receives-posthumous-medal-of-honor/   MORE FROM JOHN: Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ 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  [email protected] #sarcoidosis #sarcoidosisawareness #kidney #dermatology                

Tate Basildon has been through it all.  And he is still going through it.  Pulmonary and cardiac sarcoidosis have invaded his life.  He takes prednisone and suffers.  Yet he says he wakes up every day lucky to be alive.  Tate is a fellow podcaster who shares his stories on his own platform.  In this episode of the FSR Sarc Fighter Podcast, he talks about the blows he's suffered at the hands of sarcoidosis, but how he still works as a chef and tries to keep his life on track. SHOW NOTES Tate's website and podcast: https://tatebasildon.com/ Sarcoidosis News Pulmonary relapse report: https://sarcoidosisnews.com/news/relapse-common-pulmonary-sarcoidosis-treatment-changes/ John's story from the White House on Col. John Ripley: https://www.wsls.com/video/news/2026/06/19/col-john-ripley-of-radford-receives-posthumous-medal-of-honor/   MORE FROM JOHN: Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ 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  [email protected] #sarcoidosis #sarcoidosisawareness #kidney #dermatology            

Heidi Sedra is a healthcare professional, but that didn't make her path to diagnosis and treatment any easier.  In this episode of the FSR Sarc Fighter Podcast, Heidi shares how sarcoidosis put her in the hospital -- and that's just part of the story.     SHOW NOTES Episode 48 with Dr. Jinny Tavee  https://beatsarc.podbean.com/e/episode-48-dr-jinny-tavee-is-a-neurosarcoidosis-specialist-with-a-unique-approach-to-fighting-the-disease/ MORE FROM JOHN: Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ 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  [email protected] #sarcoidosis #sarcoidosisawareness #kidney #dermatology        

A new study from Europe takes a look at a clue as to why pulmonary sarcoidosis is worse in some people than others.  And John has a close encounter with five bears.     Show notes The study from Sarcoidosis news: https://sarcoidosisnews.com/news/genetic-variant-linked-worsening-lung-disease-sarcoidosis/ MORE FROM JOHN: Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ 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  [email protected] #sarcoidosis #sarcoidosisawareness #kidney #dermatology