Sarc Fighter: Living with Sarcoidosis and other rare diseases

In this episode of the FSR Sarc Fighter podcast I share a new study from Japan that compared people with systemic cardiac sarcoidosis -- those people who have cardiac sarc as well as other organ involvement -- with those who have only cardiac involvement.  The research found that if you have it only in your heart it may actually be more serious.  Also, FSR just released information that will give you a sigh of relief if you want to participate in a clinical trial.   I also riff a bit about election night 2024, covering a Donald Trump rally, and a speech on the difficulty of sharing scientific data with the viewing public on TV news.   Show notes Sarcoidosis news report on cardiac sarcoidosis: https://sarcoidosisnews.com/news/poorer-outcomes-seen-isolated-cardiac-sarcoidosis/ Department of Labor and Clinical Trial participation: https://www.stopsarcoidosis.org/fsr-receives-confirmation-from-the-department-of-labor-ensuring-patient-access-to-fmla-for-participation-in-clinical-trials/ My story on the Trump Rally:https://www.wsls.com/news/local/2024/11/03/local-representatives-speak-at-trumps-rally-in-salem/ Watch the Externally-Led Patient Focused Discussion before the FDA: https://www.stopsarcoidosis.org/pfdd/ 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]

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]

On October 28th the Sarcoidosis world -- led by the Foundation for Sarcoidosis Research will have perhaps its best chance ever to tell the FDA what's going on with us.  On that day, FSR is leading an event called an Externally Led Patient Focused Drug Development discussion.  On that day from 10 am to 3 pm Patients, caregivers, medical experts and maybe you, will be telling the FDA what our lives are like.  How insufficient current medications can be.  And, how badly we deserve new treatments and yes even a cure for sarcoidosis.  In this episode of the FSR Sarc Fighter Podcast, FSR CEO Mary McGowan joins me to talk about this session with the FDA, what it looks like, why it's important and how you can join in.  Please give this podcast a listen -- and please sign up now to join in on October 28th. Show notes Join the Externally-Led Patient Focused Discussion before the FDA:  https://www.stopsarcoidosis.org/events/fsr-externally-led-patient-focused-drug-development-meeting/ 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/ 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]

Stephanie Mizell has good days and bad days.  And she doesn't know what it will be until she wakes up and breathes.  Such is the life of a young mother with sarcoidosis.  Shortly after her diagnosis, Stephanie learned that FSR needed a person with her marketing talents.  She applied for the job -- and now she is helping all of us by spreading the word about sarcoidosis with her professionalism and skills.  Listen in as she tells how she learned of the job with the Foundation, and how she now uses all the tricks of the trade to make sure our social media presence is felt by as many people as possible.   Show notes Join the Externally-Led Patient Focused Discussion before the FDA:  https://www.stopsarcoidosis.org/events/fsr-externally-led-patient-focused-drug-development-meeting/ Sign up for FSR's 100-Mile Challenge: https://givp.nl/register/MGEluUUb  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/ 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]