Episode 125 | All about our session with the FDA as the Sarc community makes its case.
Sarc Fighter: Living with Sarcoidosis and other rare diseasesShow Notes
In Episode 125 of the FSR Sarc Fighter Podcast, a look into the great success of the Externally Led Patient Focused Drug Development Meeting with the FDA. John co-hosted the meeting with Mary McGowan, the CEO of the Foundation for Sarcoidosis Research as you - the sarcoidosis community joined in to share your stories with the FDA to let the policy and decision makers know what you are dealing with. How hard it is to live with this disease and how few medicines are available to treat it. The meeting happened Monday, October 28th in Washington, D.C.. In this episode of the podcast I'll give you a look behind the scenes as months of work came together in just a couple of days for a fantastic presentation to the FDA. #sarcoidosis
Show notes Watch the Externally-Led Patient Focused Discussion before the FDA: https://www.stopsarcoidosis.org/pfdd/ Support Mark Steier's wife, Caeleigh: https://stopsarcoidosis.rallybound.org/2024-team-rally-for-sarc/Team/View/193889/Team-Sarc-Mark
MORE FROM JOHN: Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Biking 4 Boomers on Tic Tok. https://www.tiktok.com/@biking.4.boomers 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]
More from Sarc Fighter: Living with Sarcoidosis and other rare diseases
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.
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.
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.
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.
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.