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Episode 126 | When is Cardiac Sarcoisosis at its worst and FMLA clearance for clinical trials

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Manage episode 451015000 series 3563916
Contenu fourni par John Carlin. Tout le contenu du podcast, y compris les épisodes, les graphiques et les descriptions de podcast, est téléchargé et fourni directement par John Carlin ou son partenaire de plateforme de podcast. Si vous pensez que quelqu'un utilise votre œuvre protégée sans votre autorisation, vous pouvez suivre le processus décrit ici https://fr.player.fm/legal.

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 carlinagency@gmail.com

  continue reading

133 episodes

Artwork
iconPartager
 
Manage episode 451015000 series 3563916
Contenu fourni par John Carlin. Tout le contenu du podcast, y compris les épisodes, les graphiques et les descriptions de podcast, est téléchargé et fourni directement par John Carlin ou son partenaire de plateforme de podcast. Si vous pensez que quelqu'un utilise votre œuvre protégée sans votre autorisation, vous pouvez suivre le processus décrit ici https://fr.player.fm/legal.

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 carlinagency@gmail.com

  continue reading

133 episodes

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