Fighting sarcoidosis as well as other rare diseases.
Episodes
Monday Mar 06, 2023
Monday Mar 06, 2023
This is a special bonus episode of the FSR Sarc Fighter podcast. You will be listening to a town hall recorded on February 18, 2023, where the guests discuss how to get more people involved in clinical trials for medications pointed at treating sarcoidosis patients.
Guests include Mary McGowan CEO of the Foundation for Sarcoidosis Research, Dr. Divya Patel Director of Sarcoidosis and ILD programs at the University of Florida, Bill Gerhart, CEO of Kinevant Sciences inc., And Garrie Farrow FSR Patient Advocate and Women of Color committee member. FSR Sarc Fighter podcast host John Carlin served as moderator.
During the hour-long presentation, the need for clinical trials in order to advance the fight against sarcoidosis is clearly laid out -- as is the difficulty in recruiting patients for the program and the reasons many patients decline to participate.
All of this with the goal of making it easier for patients to say yes and for medical science to help make it easier for patients to participate.
Show notes
Watch the Town Hall on YouTube: https://youtu.be/RTP_46gvLPU
Kinevant Clinical Trial https://bit.ly/3DaVsR6
More about Kinevant: https://kinevant.com/about-us/
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/
Webinar on becoming an Alliance Volunteer: https://www.eventbrite.com/e/becoming-an-fsr-global-sarcoidosis-clinic-alliance-volunteer-leader-tickets-445588847237
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
email Royce Robertson roycelrobertson@gmail.com
Monday Feb 20, 2023
Monday Feb 20, 2023
Wade Tomlinson is a relatively young 49 years old - and he's already been suffering from sarcoidosis for nine years. Despite his reduced ability to breathe, he hits the trails every day, where he tried to log 15,000 steps. Sometimes even more. In Episode 81 he tells john how sarcoidosis crept up on him, somewhat disguised as allergies.
Show Notes:
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
Volunteer for the FSR Global Clinical Alliance! www.stopsarcoidosis.org/gsca-leaders/
#Makeitvisible https://www.stopsarcoidosis.org/fsr-updates-and-publications/
Eat Better and Fight Sarc: Nourish by Lindsey: https://www.nourishbylindsey.com/
Wade's medicine OFEV: https://www.ofev.com/
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 sarcoidosis story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/
email me carlinagency@gmail.com
Monday Feb 06, 2023
Monday Feb 06, 2023
In Episode 80 of the Sarc Fighter podcast, we take it too sarcoidosis in two ways -- by learning how to join an important clinical trial and by living the fullest life we can despite the challenges sarcoidosis presents.
Show Notes
Kinevant Clinical Trial https://bit.ly/3DaVsR6
More about Kinevant: https://kinevant.com/about-us/
Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/
Become s community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/
Webinar on becoming an Alliance Volunteer: https://www.eventbrite.com/e/becoming-an-fsr-global-sarcoidosis-clinic-alliance-volunteer-leader-tickets-445588847237
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
email Royce Robertson roycelrobertson@gmail.com
Monday Jan 23, 2023
Monday Jan 23, 2023
Royce Robertson is battling sarcoidosis, and he has a plan to do a cool, two-wheeled fundraiser. Royce has been dealing with sarcoidosis for years. In fact he was one of the first people I ever "met" who also had sarc. He reached out to me after I published a blog abut trying to ride my bike, while medications like Cytoxan and prednisone made it all but impossible. In this episode he shares the details of his battle with sarc, and his plans to take it to the disease from the seat of his bike.
Show Notes:
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
Volunteer for the FSR Global Clinical Alliance! www.stopsarcoidosis.org/gsca-leaders/
#Makeitvisible https://www.stopsarcoidosis.org/fsr-updates-and-publications/
Eat Better and Fight Sarc: Nourish by Lindsey: https://www.nourishbylindsey.com/
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 sarcoidosis story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/
email me carlinagency@gmail.com
Monday Jan 16, 2023
Monday Jan 16, 2023
Royce Robertson has been through the wringer with sarcoidosis. It's impacted his heart in ways that impact every other aspect of his life. And yet he is scheming for a way to help all of us fight the disease by doing something he loves -- even though sarcoidosis is trying to stand in the way.
Show Notes:
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
Volunteer for the FSR Global Clinical Alliance! www.stopsarcoidosis.org/gsca-leaders/
#Makeitvisible https://www.stopsarcoidosis.org/fsr-updates-and-publications/
Eat Better and Fight Sarc: Nourish by Lindsey: https://www.nourishbylindsey.com/
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 sarcoidosis story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/
email me carlinagency@gmail.com
Monday Jan 02, 2023
Monday Jan 02, 2023
Dr. John Belperio has been looking at dozens of studies on sarcoidosis, drilling down and figuring out exactly where medical science is with respect to pulmonary sarc. How often is it fatal? What are the best treatments? What can we say about the way sarcoidosis attacks the body? He's published his review in JAMA, the Journal of the American Medical Association, and now shares his findings here on the FSR Sarc Fighter podcast!
Show Notes
Kinevant Clinical Trial https://bit.ly/3DaVsR6
More about Kinevant: https://kinevant.com/about-us/
The FSR ACTe now webpage: https://www.stopsarcoidosis.org/actnow/
Take the FSR Survey: https://rx4good.qualtrics.com/jfe/form/SV_4MYoU9YGjvAbuJg
Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/
Become s community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/
Webinar on becoming an Alliance Volunteer: https://www.eventbrite.com/e/becoming-an-fsr-global-sarcoidosis-clinic-alliance-volunteer-leader-tickets-445588847237
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
Monday Dec 19, 2022
Monday Dec 19, 2022
Doctors Christian Ascoli and Christen Vagts have done some of the most in-depth research yet when in comes to Sarcoidosis and Covid-19 vaccines. Do they protect Sarc Fighters from the virus? It's a good question, since there is strong evidence to suggest that vaccines against some other diseases are only marginally effective or not effective at all in sarc patients. Doctors Ascoli and Vagts went beyond a study of outcomes, and took a look deep inside the body to see what happens when sarc patients try to fight off the Covid-19 virus. In this episode of the Sarc Fighter Podcast, they describe in layman's terms how they were surprised by the outcome.
Show Notes:
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
Volunteer for the FSR Global Clinical Alliance! www.stopsarcoidosis.org/gsca-leaders/
#Makeitvisible https://www.stopsarcoidosis.org/fsr-updates-and-publications/
The New FSR Initiative
Nourish by Lindsey: https://www.nourishbylindsey.com/
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 sarcoidosis story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/
email me carlinagency@gmail.com
Monday Dec 05, 2022
Monday Dec 05, 2022
Leanne West felt a bump behind her ear. It was the beginning of her journey with Sarcoidosis that has lasted for over a decade and lingers to this day. In this episode of the FSR Sarc Fighter Podcast, Leeanne, who has an amazing career as a researcher at Georgia Tech, talks about how Sarcoidosis has spread throughout her body, and how she keeps it at bay as best she can.
Show Notes
Kinevant Clinical Trial https://bit.ly/3DaVsR6
More about Kinevant: https://kinevant.com/about-us/
The FSR ACTe now webpage: https://www.stopsarcoidosis.org/actnow/
Take the FSR Survey: https://rx4good.qualtrics.com/jfe/form/SV_4MYoU9YGjvAbuJg
Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/
Become s community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/
Webinar on becoming an Alliance Volunteer: https://www.eventbrite.com/e/becoming-an-fsr-global-sarcoidosis-clinic-alliance-volunteer-leader-tickets-445588847237
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
Monday Nov 21, 2022
Monday Nov 21, 2022
FSR Board chair Dr. Louise Perkins and CEO Mary McGowan say we are closer than ever to major breakthroughs in the treatment of Sarcoidosis. In Episode 75 of the FSR Sarc Fighter Podcast, they join me to talk about all the progress that is being made on may fronts -- and how we can all participate in keeping the momentum going.
Show Notes:
Kinevant Clinical Trial https://bit.ly/3DaVsR6
More about Kinevant: https://kinevant.com/about-us/
FSR Snowflake Stories: https://www.stopsarcoidosis.org/snowflake-stories/
The FSR ACTe now webpage: https://www.stopsarcoidosis.org/actnow/
Take the FSR Survey: https://rx4good.qualtrics.com/jfe/form/SV_4MYoU9YGjvAbuJg
Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/
Become s community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/
Webinar on becoming an Alliance Volunteer: https://www.eventbrite.com/e/becoming-an-fsr-global-sarcoidosis-clinic-alliance-volunteer-leader-tickets-445588847237
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
Monday Nov 07, 2022
Monday Nov 07, 2022
In Episode 74 of the Sarc Fighter Podcast we take a deep dive into the reality that Sarcoidosis in more prevalent in people of color, but they are less likely to participate in clinical trials. That's a problem for medical professionals who are trying to help solve the sarcoidosis riddle, to find more effective treatments and help more people.
Why is that?
Three guests join me today to talk about it. They share their thoughts and ideas about the reluctance of patients to participate often because of trust issues, and bias on behalf of medical professionals to recruit African Americans for trials.
- Dr. Ogugua Obi of the Brody School of Medicine at East Carolina University in North Carolina.
- Kathryn Washington, a sarcoidosis patient and member of the FSR ACTe Now Patient Advisory Committee
- Calvin Harris, sarcoidosis patient and a member of the ACTe Now Patient Advisory Committee
Show Notes
The FSR ACTe now webpage: https://www.stopsarcoidosis.org/actnow/
Take the FSR Survey: https://rx4good.qualtrics.com/jfe/form/SV_4MYoU9YGjvAbuJg
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
FSR Webpage on Financial planning for life with Sarc: https://www.stopsarcoidosis.org/financial-assistance-support-for-those-living-with-sarcoidosis/
#Makeitvisible https://www.stopsarcoidosis.org/fsr-updates-and-publications/
The New FSR Initiative
Nourish by Lindsey: https://www.nourishbylindsey.com/
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