Sarc Fighter: Living with Sarcoidosis and other rare diseases John Carlin

In Episode 113 of the FSR Sarc Fighter podcast, John is joined by Kinevant Sciences CEO Bill Gerhart and the Senior Director of Patient Advocacy Rayne Rodgers.  The team at Kinevant is excited to share the news of the progress they are making with their drug, Namilumab as a potential new therapy for sarcoidosis patients. 

 
SHOW NOTES
Kinevant Sciences: https://kinevant.com/
Namilumab: https://kinevant.com/research/
The original Interview with Bill and Rayne: https://beatsarc.podbean.com/e/episode-69-kinevant-is-working-on-namilumab-a-potential-new-drug-for-sarcoidosis/
Donate to Royce and Cycle4sarc: https://stopsarcoidosis.rallybound.org/Team/View/172803/Cycle4Sarc
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 me  carlinagency@gmail.com
 
 
 
 
 
 
 
 
 
 
 
 

Joining me today on the FSr Sarc Fighter Podcast is Sanjay Shukla, CEO of aTyr Pharma.  Sanjay returns to the podcast with a promising update on Efzofitimod, the most promising candidate to become the first drug developed specifically to fight sarcoidosis.  Sanjay joins the podcast from Brazil, just one of the countries around the world, where the drug is in clinical trials.  He will discuss how much more testing is needed and when the drug could become available to sarcoidosis patients.

 
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/
Donate to Royce and Cycle4sarc: https://stopsarcoidosis.rallybound.org/Team/View/172803/Cycle4Sarc
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 me  carlinagency@gmail.com
 
 
 
 
 
 
 
 
 
 

Episode 111 is a special episode of the FSR Sarc Fighter podcast.  It's sarcoidosis awareness month -- and the folks who are fighting for us at FSR want to get the word out.  So Angela O'Malley and Cathi Davis join me for the show to talk about how they are working behind the scenes to get people to "Say Sarcoidosis."  But also on the show is fellow sarc fighter Mathew Hall, who is an Ironman triathlete, who found himself in a hospital bed -- unable even to take a walk down the hall.  He joins the show as well to share his story and to talk about his plans to bounce back to the extent he can -- and to use it to raise awareness and some funding for FSR. 

 
Show Notes
Support Mathew https://stopsarcoidosis.rallybound.org/steps-for-sarc-2023/Member/MyPage/6333308/Mathew-Hall
Sarcoidosis awareness Month 2024 https://www.stopsarcoidosis.org/saysarcoidosis/
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/
Donate to Royce and Cycle4sarc: https://stopsarcoidosis.rallybound.org/Team/View/172803/Cycle4Sarc
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 me  carlinagency@gmail.com
 
 
 
 
 
 
 
 
 

In this Episode of the Sarc Fighter podcast, we learn how Walgreens is making Sarcoidosis a priority for its customers.  Not only is Walgreens doing a fundraiser for the Foundation for Sarcoidosis Research -- the chain is talking about the disease and spreading the word that sarcoidosis is out there, that patients need help, and that the disease needs to be recognized as a big problem for the medical community.  Listen in as Melissa Pharo of Walgreens and Angela O'Malley of FSR join me to talk about how this major pharmaceutical chain recognizes the needs of the sarcoidosis community.

 
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/
FSR awards $100,000 in Grants: https://www.stopsarcoidosis.org/fsr-awards-100000-in-support-of-cardiac-sarcoidosis/
More on ACE test to determine multiple organ involvement of Sarcoidosis: https://sarcoidosisnews.com/news/biomarker-detects-multiple-organ-involvement-sarcoidosis-diagnosis/
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 me  carlinagency@gmail.com
 
 
 
 
 
 
 
 
 

In this episode of the FSr Sarc Fighter Podcast, Dr. Laura Runge-Gordon talks about how neurosarcoidosis crept into her life after years of misdiagnosis.  She has seen every kind of complication you can imagine -- not to mention doing it all with a stressful job during the pandemic.  Meanwhile, Royce Robertson returns with another ambitious fundraiser for sarcoidosis, and the Foundation for Sarcoidosis Research. 

 

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/
Donate to Royce and Cycle4sarc: https://stopsarcoidosis.rallybound.org/Team/View/172803/Cycle4Sarc
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 Reports on AWOL Marine Michael Brown:  https://www.wsls.com/news/local/2024/02/01/10-news-exclusive-awol-marine-who-killed-his-stepfather-in-franklin-county-speaks-out/
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  carlinagency@gmail.com
 
 
 

Perry Montoya is a travel writer and tour guide.  He's led people through the holy sites around Jerusalem and understands the history of the Bible.  Now he's learning to understand and cope with Sarcoidosis.  Listen in as he details the demands of his disease including multiple organ involvement.  Despite this setback, he remains optimistic and is looking for ways to help others.  He also discusses a rare disorder within the sarcoidosis space known as Heerfordt-Waldenstrom Syndrome. 

 
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/
More onHeerfordt-Waldenström syndrome:  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5595615/
FSR awards $100,000 in Grants: https://www.stopsarcoidosis.org/fsr-awards-100000-in-support-of-cardiac-sarcoidosis/
More on ACE test to determine multiple organ involvement of Sarcoidosis: https://sarcoidosisnews.com/news/biomarker-detects-multiple-organ-involvement-sarcoidosis-diagnosis/
No Stupid Questions Podcast about the Zeigarnic Effect: https://freakonomics.com/podcast/do-you-need-closure/
More about the Zeigarnic effect: https://en.wikipedia.org/wiki/Zeigarnik_effect
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 me  carlinagency@gmail.com