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 94 | Tony Haskel returns to the podcast after a rough few months. And do pulmonary Sarc patients get a fair shake at transplant time?
Episode 93 | John tests his Sarcoidosis on assignemt on the U.S.- Mexico border with the National Guard.
Episode 92 | Researcher Dr. Stephen Tilley on where we got sarcoidosis
Episode 91| Promise from a new drug - and diagnosing neurosarcoidosis is hard.
Episode 90 | Mathew Campbell ’s Sarc went from his lungs to his heart. And FSR Crystal Gala highlights
Episode 89 | What does your DNA have to do with Sarcoidosis? An FSR Town Hall.
Episode 88 | MaryKay Reidenbach has been fighting the fight for 28 years.
Episode 87 | Writer Rebeccca Stanfel on the Pain from Sarcoidosis and Legitimate Need for Opioids.
Episode 86 | Betsy Bennett beat breast cancer - but Sarcoidosis arrived shortly after.
Episode 85 | An FSR Town Hall - Getting closer to the first ever drug designed to fight Sarcoidosis
Episode 84 | A patient story to go along with Sarcoidosis Awareness month and how FSR is leading the fight.
Episode 83 | Tony Haskel thought his heart was healthy. Then came Sarcoidosis.
Episode 82 | Sam Wassel’s unexplained abdominal pain was sarcoidosis - plus Cycle4Sarc goes public
Bonus Episode | FSR Town Hall - Uncovering the Future of Sarcoidosis Treatment and Clinical Trials
Episode 81 | Wade Tomlinson tries to walk away from sarcoidosis.
Episode 80 | John riffs on sarcoidosis clinical trial opportunities and ... Disney
Episode 79a | Royce Robertson is Fighting Sarcoidosis from the seat of his bike!
Episode 79 | Sarc Fighter Royce Robertson bares his sole while looking for a way to help fight Sarcoidosis
Episode 78 | Dr. John Belperio at UCLA has done a deep dive into the state of Sarcoidosis.
Episode 77 | Covid Vaccines and Sarcoidosis: Surprising new research from the University of Illinois Chicago
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