Sarc Fighter: Living with Sarcoidosis and other rare diseases

Sarc Fighter: Living with Sarcoidosis and other rare diseases

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Sarc Fighter: Living with Sarcoidosis and other rare diseases episodes

  • Episode 93 | John tests his Sarcoidosis on assignemt on the U.S.- Mexico border with the National Guard.

    In this episode of the FSR Sarc Fighter Podcast, I tested my health as I was embedded with the National Guard, patrolling the U.S. - Mexico border at Eagle Pass, Texas.  Temperatures soared up to 103 degrees, as I worked to report on the battle between migrants wanting to cross into the United States, and authorities who want them to come through legally.  It's a daily battle as the migrants cross the Rio Grande River, but come up against the concertina wire or C-wire barriers keeping them from crossing into Texas.  In this Episode, I talk about what it was like to witness the stand off, as the heat and stress test my own strength and resolve as I deal with Sarcoidosis. 

    John on the border as a group of migrants enters the United States, near Eagle Pass, Tx.

     

    Show notes:

    More on aTyr Pharma: https://atyrpharma.com/

    Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq

    More on the Efzofitimod study: https://sarcoidosisnews.com/news/benefits-seen-efzofitimod-pulmonary-sarcoidosis-treatment-trial/

    Tony Haskins KISS fundraiser https://stopsarcoidosis.rallybound.org/TonyHaskel?tab=Dashboard

    Royce's Cycle4Sarc page: https://stopsarcoidosis.rallybound.org/cycle4sarc?tab=Dashboard&fbclid=PAAaa9zWEjpGVyS1Q5Swa8mm5JT0t7JH13dfxVxdW1QlBMmbiRmc00Ol-uu-c

    Royce Robertsons original interview: https://beatsarc.podbean.com/e/episode-79a-royce-robertson-is-fighting-sarcoidosis-from-the-seat-of-his-bike/

    Help FSR further its mission by becoming an Alliance Volunteer:  www.stopsarcoidosis.org/gsca-leaders/

    Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/

    MORE FROM JOHN

    John's Border Coverage: https://www.wsls.com/news/local/2023/07/24/videos-day-1-on-the-frontline-with-john-carlin-at-the-us-mexico-border/

    John Carlin's Outdoors: https://www.wsls.com/topic/John_Carlin%27s_Outdoors/

    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 Royce Robertson  [email protected]

    44 min
  • Episode 92 | Researcher Dr. Stephen Tilley on where we got sarcoidosis

    Dr. Stephen Tilley is an Associate Professor of Medicine at the University of North Carolina.  He specializes in lung disease with a concentrated effort on sarcoidosis.  He is researching new methods and tools to combat the disease, by looking at the response our bodies create to different pathogens -- which could lead to a greater understanding of the cause and treatment of Sarcoidosis.  In addition, Dr. Tilley believes that we may have inhaled something that ultimately causes our bodies to trigger the immune response that becomes sarcoidosis.  In the interview, he will discuss his beliefs and why some people get sarcoidosis and others do not.

     

    Show Notes

    • www.kinevant.com
  • www.sarcoidosistrial.com
  • Click here for information on how to sign up for the clinical trial: https://bit.ly/3DaVsR6
  • ClinicalTrials.gov listing for RESOLVE-Lung: https://clinicaltrials.gov/ct2/show/NCT05314517
  • ClinicalTrials.gov listing for RESOLVE-Heart: https://clinicaltrials.gov/ct2/show/NCT05351554
  • More on Dr. Stephen Tilley:  https://www.med.unc.edu/medicine/pulmonary/people/tilley/

    Royce's Cycle4Sarc page: https://stopsarcoidosis.rallybound.org/cycle4sarc?tab=Dashboard&fbclid=PAAaa9zWEjpGVyS1Q5Swa8mm5JT0t7JH13dfxVxdW1QlBMmbiRmc00Ol-uu-c

    Royce Robertsons original interview: https://beatsarc.podbean.com/e/episode-79a-royce-robertson-is-fighting-sarcoidosis-from-the-seat-of-his-bike/

    Help FSR further its mission by becoming an Alliance Volunteer:  www.stopsarcoidosis.org/gsca-leaders/

    Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/

    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 Royce Robertson  [email protected]

     

     

     

     

     

     

     

     

    56 min
  • Episode 91| Promise from a new drug - and diagnosing neurosarcoidosis is hard.

    In Episode 91 of the FSR Sarc Fighter podcast, John shares two reports about developments in the treatment of sarcoidosis.  He looks at recent studies published in Sarcoidosis News that show promise for aTyr Pharma's efzofitimod, currently in clinical trials, and also a report from Sweden that shows the difficulty in diagnosing neurosarcoidosis without an invasive and dangerous biopsy.

    Show notes:

    More on aTyr Pharma: https://atyrpharma.com/

    Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq

    More on the Efzofitimod study: https://sarcoidosisnews.com/news/benefits-seen-efzofitimod-pulmonary-sarcoidosis-treatment-trial/

    The study about neurosarcoidosis: https://sarcoidosisnews.com/news/few-patients-get-definite-neurosarcoidosis-diagnosis-study/

    Royce's Cycle4Sarc page: https://stopsarcoidosis.rallybound.org/cycle4sarc?tab=Dashboard&fbclid=PAAaa9zWEjpGVyS1Q5Swa8mm5JT0t7JH13dfxVxdW1QlBMmbiRmc00Ol-uu-c

    Royce Robertsons original interview: https://beatsarc.podbean.com/e/episode-79a-royce-robertson-is-fighting-sarcoidosis-from-the-seat-of-his-bike/

    Help FSR further its mission by becoming an Alliance Volunteer:  www.stopsarcoidosis.org/gsca-leaders/

    Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/

    MORE FROM JOHN

    John Carlin's Outdoors: https://www.wsls.com/topic/John_Carlin%27s_Outdoors/

    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 Royce Robertson  [email protected]

     

     

     

     

     

     

     

     

     

     

    41 min
  • Episode 90 | Mathew Campbell ’s Sarc went from his lungs to his heart. And FSR Crystal Gala highlights

    Matthew Campbell was trying to come back from a couple years of being out of shape, but his body seemed off somehow.  His normal pep on the basketball court just wasn't there.  What WAS there was sarcoidosis.  Listen in as Matthew shares the story of how he gradually realized he was fighting way more than his fitness.

    Show notes:

    More on aTyr Pharma: https://atyrpharma.com/

    Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq

    Back episodes from folks at the gala:

    Erica Courtenay Mann: https://podcasts.apple.com/ca/podcast/episode-55-erica-courtenay-mann-has-sarcoidosis-on/id1499587273?i=1000551017276

    Warren Robinson: https://beatsarc.podbean.com/e/episode-50-warren-robinson-s-father-died-suddenly-and-the-family-struggled-to-find-out-why/

    Calvin Harris: https://www.youtube.com/watch?v=X1BJS2VMJSY

    Royce's Cycle4Sarc page: https://stopsarcoidosis.rallybound.org/cycle4sarc?tab=Dashboard&fbclid=PAAaa9zWEjpGVyS1Q5Swa8mm5JT0t7JH13dfxVxdW1QlBMmbiRmc00Ol-uu-c

    Royce Robertsons original interview: https://beatsarc.podbean.com/e/episode-79a-royce-robertson-is-fighting-sarcoidosis-from-the-seat-of-his-bike/

    Help FSR further its mission by becoming an Alliance Volunteer:  www.stopsarcoidosis.org/gsca-leaders/

    Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/

    MORE FROM JOHN

    John Carlin's Outdoors: https://www.wsls.com/topic/John_Carlin%27s_Outdoors/

    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 Royce Robertson  [email protected]

     

     

     

     

     

     

     

     

     

     

    1 hr 12 min
  • Episode 89 | What does your DNA have to do with Sarcoidosis? An FSR Town Hall.

    We don't know what causes Sarcoidosis, but we are getting closer and closer.  A part of that research is coming from genetic experts at 23andMe.  The genetics company has worked with thousands of people to study their DNA -- and to drill down to see if there is a connection between our genes and whether we get Sarcoidosis.  Their findings were presented at an FSR Townhall forum hosted by Sarc Fighter Podcast Host John Carlin.  The panelists include:

    C. Ann Scott- Woman of Color Patient Advisory Committee, Foundation For Sarcoidosis Research,  Dr. Courtney Montgomery- Director of the Sarcoidosis Research Clinic at the Oklahoma Medical Research Foundation, Mary McGowan – Chief Executive Officer, Foundation for Sarcoidosis Research, and Dr. Suyash Shringarpure – Senior Statistical Geneticist of 23andMe.

    Show notes

    Watch the Town Hall on YouTube.  https://youtu.be/S2VLXmsTrBY

    More about 23andMe https://www.23andme.com/

    Royce's Cycle4Sarc page: https://stopsarcoidosis.rallybound.org/cycle4sarc?tab=Dashboard&fbclid=PAAaa9zWEjpGVyS1Q5Swa8mm5JT0t7JH13dfxVxdW1QlBMmbiRmc00Ol-uu-c

    Royce Robertsons original interview: https://beatsarc.podbean.com/e/episode-79a-royce-robertson-is-fighting-sarcoidosis-from-the-seat-of-his-bike/

    Help FSR further its mission by becoming an Alliance Volunteer:  www.stopsarcoidosis.org/gsca-leaders/

    Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/

    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 Royce Robertson  [email protected]

     

     

     

     

     

     

     

     

    Together they discussed the methods they use for the research as well as important issues of privacy, and the findings to date.

     


     

     

    1 hr 14 min
  • Episode 88 | MaryKay Reidenbach has been fighting the fight for 28 years.

    Sarc Fighter MaryKay Reidenbach has been fighting sarcoidosis for close to three decades.  It's invaded so many parts of her body, it's hard to figure out where it's the worst.  But she keeps plugging along, trying to live her best life, and largely doing so.  Hear her story in this episode of the FSR Sarc Fighter Podcast.

    • www.kinevant.com
  • www.sarcoidosistrial.com
  • Click here for information on how to sign up for the clinical trial: https://bit.ly/3DaVsR6
  • ClinicalTrials.gov listing for RESOLVE-Lung: https://clinicaltrials.gov/ct2/show/NCT05314517
  • ClinicalTrials.gov listing for RESOLVE-Heart: https://clinicaltrials.gov/ct2/show/NCT05351554
  • Attend the FSR Crystal Awards Gala: https://www.stopsarcoidosis.org/gala-2023/

    Royce's Cycle4Sarc page: https://stopsarcoidosis.rallybound.org/cycle4sarc?tab=Dashboard&fbclid=PAAaa9zWEjpGVyS1Q5Swa8mm5JT0t7JH13dfxVxdW1QlBMmbiRmc00Ol-uu-c

    Royce Robertsons original interview: https://beatsarc.podbean.com/e/episode-79a-royce-robertson-is-fighting-sarcoidosis-from-the-seat-of-his-bike/

    Help FSR further its mission by becoming an Alliance Volunteer:  www.stopsarcoidosis.org/gsca-leaders/

    Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/

    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 Royce Robertson  [email protected]

     

     

     

    47 min
  • Episode 87 | Writer Rebeccca Stanfel on the Pain from Sarcoidosis and Legitimate Need for Opioids.

    Rebecca Stanfel is a Sarc Fighter who also happens to be a wonderful writer  -- to the point that national publications share her work.  She recently published a blog in the Huffington Post, where she talked about the pain from Sarcoidosis that was so bad, only opioids would give her relief.  In a world where we now often shudder at the mention of these addictive drugs, Stanfel wrote that they were her only path forward and that they serve a necessary purpose in certain situations -- including hers.

    That is not to say it wasn't a struggle or that it was easy to wean herself from the medication.  It wasn't.  But in her writings, and during the discussion on the podcast she talks about how she fought to free herself from the drugs while still dealing with sarcoidosis.

     

     

    Show notes:

    Rebecca's post on Huffpost:  https://www.huffpost.com/entry/oxycontin-fentanyl-opioid-crisis_n_63d1603de4b0c8e3fc7b72f6

    More on aTyr Pharma: https://atyrpharma.com/

    Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq

    Attend the FSR Crystal Awards Gala: https://www.stopsarcoidosis.org/gala-2023/

    Royce's Cycle4Sarc page: https://stopsarcoidosis.rallybound.org/cycle4sarc?tab=Dashboard&fbclid=PAAaa9zWEjpGVyS1Q5Swa8mm5JT0t7JH13dfxVxdW1QlBMmbiRmc00Ol-uu-c

    Royce Robertsons original interview: https://beatsarc.podbean.com/e/episode-79a-royce-robertson-is-fighting-sarcoidosis-from-the-seat-of-his-bike/

    Help FSR further its mission by becoming an Alliance Volunteer:  www.stopsarcoidosis.org/gsca-leaders/

    Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/

    MORE FROM JOHN

    John Carlin's Outdoors: https://www.wsls.com/topic/John_Carlin%27s_Outdoors/

    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 Royce Robertson  [email protected]

     

     

     

     

     

     

     

    55 min
  • Episode 86 | Betsy Bennett beat breast cancer - but Sarcoidosis arrived shortly after.

    Betsy Bennett is fighting Sarcoidosis.  That might seem easy after breast cancer led to a double mastectomy.  But now the fatigue and ongoing battle with Sarc are taking a big toll on her quality of life.  Listen in as she shares the story of how she thought she was disease free for just a brief time.

     

     

    Show Notes

    • www.kinevant.com
  • www.sarcoidosistrial.com
  • Click here for information on how to sign up for the clinical trial: https://bit.ly/3DaVsR6
  • ClinicalTrials.gov listing for RESOLVE-Lung: https://clinicaltrials.gov/ct2/show/NCT05314517
  • ClinicalTrials.gov listing for RESOLVE-Heart: https://clinicaltrials.gov/ct2/show/NCT05351554
  • Betsy on Youtube: www.youtube.com/@DrBetsyB

    Sarcoidosis Awareness Month Info: https://www.stopsarcoidosis.org/standupforsarc/

    Attend the FSR Crystal Awards Gala: https://www.stopsarcoidosis.org/gala-2023/

    Royce's Cycle4Sarc page: https://stopsarcoidosis.rallybound.org/cycle4sarc?tab=Dashboard&fbclid=PAAaa9zWEjpGVyS1Q5Swa8mm5JT0t7JH13dfxVxdW1QlBMmbiRmc00Ol-uu-c

    Royce Robertsons original interview: https://beatsarc.podbean.com/e/episode-79a-royce-robertson-is-fighting-sarcoidosis-from-the-seat-of-his-bike/

    Help FSR further its mission by becoming an Alliance Volunteer:  www.stopsarcoidosis.org/gsca-leaders/

    Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/

    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 Royce Robertson  [email protected]

     

     

    1 hr 21 min
  • Episode 85 | An FSR Town Hall - Getting closer to the first ever drug designed to fight Sarcoidosis

    This podcast is a recording of the amazing town hall discussion looking at aTyr Pharma's drug that shows great promise as a replacement for prednisone for pulmonary sarcoidosis patients.  In this discussion, we will hear from aTyr CEO Dr. Sanjay Shukla, FSR CEO Mary McGowan, Patient Jim Kuhn, and Dr. Shambhu Aryal - the Medical Director of the Inova Sarcoidosis Center.  Together we look at the problems with the current therapies available to the sarcoidosis community, the frustration felt by both patients and physicians, and the promise of a drug called efzofitimod, which is now in Stage three clinical trials. 

    This is a compelling discussion where, once again, thanks to the team at the Foundation for Sarcoidosis Research, all the key players are available and more than willing to share their portion of the story and all it takes to move the needle on research.

    Show notes:

    Watch the Town Hall on You tube: https://youtu.be/mAXK1Ij8SgU

    Sarcoidosis Awareness Month Info: https://www.stopsarcoidosis.org/standupforsarc/

    More on aTyr Pharma: https://atyrpharma.com/

    Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq

    aTyr News Release: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-dosing-first-patient-pivotal-phase-3-efzo

    Attend the FSR Crystal Awards Gala: https://www.stopsarcoidosis.org/gala-2023/

    Royce's Cycle4Sarc page: https://stopsarcoidosis.rallybound.org/cycle4sarc?tab=Dashboard&fbclid=PAAaa9zWEjpGVyS1Q5Swa8mm5JT0t7JH13dfxVxdW1QlBMmbiRmc00Ol-uu-c

    Royce Robertsons original interview: https://beatsarc.podbean.com/e/episode-79a-royce-robertson-is-fighting-sarcoidosis-from-the-seat-of-his-bike/

    Help FSR further its mission by becoming an Alliance Volunteer:  www.stopsarcoidosis.org/gsca-leaders/

    Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/

    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 Royce Robertson  [email protected]

     

    1 hr 24 min
  • Episode 84 | A patient story to go along with Sarcoidosis Awareness month and how FSR is leading the fight.

    April is Sarcoidosis Awareness month and FSR has many ways that the community can participate -- with your photos, videos and even holding up signs.  It's all part of making the world aware that Sarcoidosis is a problem -- and remember the squeaky wheel gets the grease.  Well it's time to squeak!  Joining me on the FSR Sarc Fighter podcast this week are FSR Director of Development Angela O'Malley, Senior communications and Marketing Director Cathi Davis, and FSR Board Member and sarc patient Craig Lipset.  Hear Craig's story about how sarcoidosis slowed his life as a young executive, and how he made his way to a leadership position with FSR -- and more importantly, how FSR is making it possible and even probable that more companies will try to find new drugs to fight the disease. 

     

    Show notes:

    Sarcoidosis Awareness Month Info: https://www.stopsarcoidosis.org/standupforsarc/

    More on aTyr Pharma: https://atyrpharma.com/

    Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq

    aTyr News Release: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-dosing-first-patient-pivotal-phase-3-efzo

    Attend the FSR Crystal Awards Gala: https://www.stopsarcoidosis.org/gala-2023/

    Royce's Cycle4Sarc page: https://stopsarcoidosis.rallybound.org/cycle4sarc?tab=Dashboard&fbclid=PAAaa9zWEjpGVyS1Q5Swa8mm5JT0t7JH13dfxVxdW1QlBMmbiRmc00Ol-uu-c

    Royce Robertsons original interview: https://beatsarc.podbean.com/e/episode-79a-royce-robertson-is-fighting-sarcoidosis-from-the-seat-of-his-bike/

    Help FSR further its mission by becoming an Alliance Volunteer:  www.stopsarcoidosis.org/gsca-leaders/

    Become a community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/

    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 Royce Robertson  [email protected]

     

     

    56 min

About Sarc Fighter: Living with Sarcoidosis and other rare diseases

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Fighting sarcoidosis as well as other rare diseases.

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