Sarc Fighter: Living with Sarcoidosis and other rare diseases

Once you receive a diagnosis of Sarcoidosis, you have an answer.  But that raises more questions.  What medications should I take?  Will they work?  Is it the right medication?  What complications could I face?  Do I have the right doctor, or is the right doctor not in my local area?  In many cases sarcoidosis means you need to travel to get the care you need.  Your local doctors may not have enough experience to deal with your case.  That was the situation for Royce Robertson.  He spent tens of thousands of dollars just getting to and from his care.  That's before he paid for traditional medical expenses.  In this episode of the FSR Sarc Fighter podcast, Royce talks about raising money to help people offset the cost of travel.  

Show Notes

Support Royce:  https://stopsarcoidosis.rallybound.org/Team/View/172803/Cycle4Sarc

How to take the Veterans survey:

Log in to your FSR-SARC Patient Registry account.

Go to your Dashboard or Surveys/Studies tab.

Look for the Military Veterans Survey and click “Start” to begin.

Please note – you will need to complete the Baseline Questionnaire before having access to the FSR Military Veterans Survey.

https://www.stopsarcoidosis.org/patient-registry/

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  [email protected]

#sarcoidosis #sarcoidosisawareness #particulatematter

Sarah Bishop has a little extra compared to the rest of us.  Even though she endures daily struggles with Sarcoidosis she pushes herself to the limit.  In this case the limit is an endurance event called The Goat, which takes place in her native New Zealand.  Sarah turned her expedition into a fundraiser for the Foundation for Sarcoidosis Research, and it gained national notoriety and momentum.  In this episode of the FSR Sarc Fighter podcast, Sarah describes the grueling training and how sarcoidosis makes everything just that much more difficult.

 

 

Show Notes

 

Sarah's Facebook Page https://www.facebook.com/groups/1171838998236662/posts/1171929584894270/

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  [email protected]

#sarcoidosis #sarcoidosisawareness #particulatematter

The Foundation for Sarcoidosis Research (FSR) is gaining national traction in the fight against sarcoidosis—championing research funding, patient rights, and access to treatment. In this episode, we dive into how FSR is helping patients receive the care they deserve while empowering the research community to develop new sarcoidosis treatments, therapies, and clinical breakthroughs.

We also explore how the Foundation protects and advocates for patients who choose to participate in sarcoidosis clinical trials.  From advocacy to innovation, learn how the Foundation for Sarcoidosis Research is shaping the future of sarcoidosis care.

Listen in as FSR CEO Mary McGowan shares the news of a big award for the Foundation.

Show Notes

Watch the Reveal Video for the Voice of the Patient Award:

https://22731230.hs-sites.com/rare-disease-week-rva?ecid=ACsprvuh4hPVM-EpuV6h1LCQIIVcgakGq3L3ldFCfwDvvoWpm8_lTO4p5cCXzrvQH09E0wNjpA6q&utm_campaign=2024 Rare Disease Week

 

Obituary Elaine Carlin: https://www.millerplonkafuneralhome.com/obituary/ElaineEPratt-Carlin
 
 

Here is a list of the members of the FSR Global Sarcoidosis Clinic Alliance- Now 50 members strong!

https://www.stopsarcoidosis.org/about-fsr-global-sarcoidosis-clinic-alliance/
 
If individuals living with sarcoidosis or their caregivers would like to join one of our Community Education Groups, they can find a list of active groups at this link:
https://www.stopsarcoidosis.org/fsr-gsca-community-groups/

 

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  [email protected]

#sarcoidosis #sarcoidosisawareness #particulatematter

Janet Mockovciak has been through the wringer.  Her sarcoidosis has gone from bad to worse.  She has tried all the medications that most patients have used, but they only seem to last for a brief period of time.  Then they stop.  In the meantime, the sarcoidosis spreads throughout her system.  Despite that, she manages to walk two miles every day, and recently went skiing with an oxygen tank on her back!  Listen as Janet describes all she has been through -- with the takeaway being that she is still working to have the life that she wants and deserves.  

Show Notes

 

 

Here is a list of the members of the FSR Global Sarcoidosis Clinic Alliance- Now 50 members strong!

https://www.stopsarcoidosis.org/about-fsr-global-sarcoidosis-clinic-alliance/
 
If individuals living with sarcoidosis or their caregivers would like to join one of our Community Education Groups, they can find a list of active groups at this link:
https://www.stopsarcoidosis.org/fsr-gsca-community-groups/

 

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  [email protected]

#sarcoidosis #sarcoidosisawareness #particulatematter

Dr. Mark Mallozzi at National Jewish Health in Denver is examining the airborne particles or "particulate matter" that may play a role in triggering sarcoidosis.  In this episode of the FSR Sarc Fighter Podcast, Dr. Mallozzi details some of the things in the air that we have no idea we are breathing.  He looks at the evidence from the dust at 9-11, to burn pits for veterans to smoke from wildfires -- places where cases of sarcoidosis tend to spike.

Show Notes

More on Dr. Mark Mallozzi: https://www.stopsarcoidosis.org/fsr-and-ats-announce-dr-mark-mallozzi-as-the-new-partner-grant-awardee/

Donate link
https://stopsarcoidosis.rallybound.org/gratitude-and-giving-2025/Donate
 
Voice of the Patient Report 
https://www.stopsarcoidosis.org/wp-content/uploads/FSR_2025_VoiceOfPatient_Report_R05_Digital.pdf
 
FSR 10 Year Registry Report 
https://www.stopsarcoidosis.org/registry-report
 
YouTube Video - Cycling in Belgium and and Netherlands: https://www.youtube.com/watch?v=ytJBORBx9Gs
 
 

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  [email protected]

#sarcoidosis #sarcoidosisawareness #particulatematter