Sarc Fighter: Living with Sarcoidosis and other rare diseases
Health & Fitness:Medicine
Sarcoidosis patient Frank Rivera has one of the most severe cases of Sarc you can imagine. "It's easier to tell you where I don't have it, than where I do," Frank told me during our talk on the podcast. Frank was one a runner. A good one, turning a marathon time of 2:30 and running under a 4-minute mile. Now, he walks with a cane. Despite the setbacks, Frank Rivera is one of the loudest voices in the fight against Sarcoidosis. He organizes a walk on Long Island. He's just published a book. He even worked to get a billboard in New York's Times Square to fight Sarcoidosis. I hope you enjoy our talk recorded in February of 2020 at Chevy Chase, Maryland during a meeting of advocates for the Foundation for Sarcoidosis Research.
Frank's Walk https://www.ticketor.com/sarcoidosisofli/event/6th-annual-sarcoidosis-of-long-island-awareness-walk-187357
Frank's website, Sarcoidosis of Long Island https://www.sarcoidosisofli.org/
Buy Frank's book: https://www.amazon.com/Walking-Silent-Pain-Autobiography-Resilience/dp/B084QM4ZFV/ref=sr_1_1?crid=H7OUADZISLMH&keywords=walking+in+silent+pain&qid=1581713780&s=books&sprefix=walking+in+silent+pain%2Cstripbooks%2C160&sr=1-1&pldnSite=1
Other mentions from the Podcast
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/
FSR Summits 2020 https://www.stopsarcoidosis.org/patient-summits/
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 sarcfighter@gmail.com
Sarc Fighter Facebook Page https://www.facebook.com/SarcFighter/
Episode 122 | Lindsay Lawrence was a surfer until sarcoidosis pulled her under
Episode 121 | Wade Tomlinson needed a lung transplant
Episode 120 | Dr. Kamal Bharucha is a researcher who found himself a heartbeat away from real trouble
Episode 119 | Jessica Soules deals with Neurosarcoidosis
Episode 118 | Mark Steier -- Who wrote the Sarc Fighter theme song has an unpdate, and his wife Caeleigh goes long for FSR
Episode 117 | Renwick Brutus tried to write his own insurance policy. But sarcoidosis intervened.
Episode 116 | Xentria has a drug - XTMAB-16 that shows promise in fighting Sarcoidosis
Episode 115 | Sarc Fighter Andrea Maione has both sarcoidosis and long COVID. It's no party.
Episode 114 | Influencer Jonathan Carlin uses YouTube and other social media for an FSR Fundraiser
Episode 113 | Kinevant Sciences makes progress with its drug Namilumab
Episode 112 | aTyr is getting closer to a new drug to fight sarcoidosis.
Episode 111 | Mathew Hall hits the wall with sarcoidosis. And it's Sarcoidosis Awareness Month!
Episode 110 | Walgreens is helping to fight Sarcoidosis
Episode 109 | Sarcoidosis has not been kind to Laura Runge-Gordon
Episode 105 | Perry Montoya has traveled the world, but now he's on a new journey.
Episode 107 | Mark Simbrowsky has a racing heart. Even when he's sitting still.
Episode 106 | Rachelle DeMaria just wants to launch her life
Episode 104 | John Martin thought it was time to get his affairs in order.
Episode 103 | Closure. Why we need it and why sarcoidosis won’t give it to us.
Episode 102a | Sherron Fantauzzi Is fighting the good fight.
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