Episode 163 | New hope for people with kidney and/or skin Sarcoidosos

New studies show new hope and understanding for battling sarcoidosis.  In one, researchers in the Netherlands looked at the effectiveness of steroids in treating kidney sarcoidosis. In other news there's seems to be promise in fighting sarcoidosis of the skin. Show Notes   Mary McGowan's message on YouTube: https://www.youtube.com/watch?v=CGtM5MHSV88 Sarcoidosis News Report on steroids and kidney sarcoidosis: https://sarcoidosisnews.com/news/corticosteroids-rapidly-improve-kidney-function-renal-sarcoidosis/ The latest from the American Academy of Dermatology:  https://www.stopsarcoidosis.org/dermatology-meeting/ 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 #kidney #dermatology    

It's clear that military veterans are more likely to suffer from Sarcoidosis than the general population.  Dan Frank served as a Navy pilot.  Years later, doctors told him he had sarcoidosis.  While we don't know the cause -- the medical world and indeed the U.S Government, through the PACT Act, recognize that Military service may expose service members to conditions that cause sarcoidosis.  In this episode of the FSR Sarc Fighter Podcast, Dan shares his story of life on an aircraft carrier and his battle with sarcoidosis.   Show notes Go to the FSR home page for info on Sarcoidosis Awareness Month. https://www.stopsarcoidosis.org/ John's Story from the Aircraft Carrier: https://www.youtube.com/watch?v=tgRDhHf60XY 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/   Support Royce Robertson: https://stopsarcoidosis.rallybound.org/Team/View/172803/Cycle4Sarc   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                           

April is Sarcoidosis Awareness month, and that's something to sing about.  And walk about.  And talk about.  And so much more.  In this podcast, I'll be speaking with Tricha Shivas, Chief of Staff and Strategy at the Foundation for Sarcoidosis Research, and Kate Anistasia, Director of Global Patient Programs.  They have a whole menu of options that will excite you when it comes to way to celebrate and participate in Sarcoidosis Awareness month -- including a brief sing-along with the Sarc Fighter theme song, Zombie.  This is gonna be fun.  So listen in and prepare to get moving to make people See Sarcoidosis. Show notes Go to the FSR home page for info on Sarcoidosis Awareness Month. https://www.stopsarcoidosis.org/ Die Laughing:  www.dielaughing.org 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                         

Dan Keota lives outside Philadelphia.  He needs a double lung transplant.  It's serious.  But Dan is one of those people who find comedy just about anywhere -- even in the darkest throws of his own condition.  Listen as Dan tells the story of how he is turning to humor while he hopes a lung donor becomes available.  Be sure to listen at the end to hear his first on-stage comedy routine!   Show Notes Die Laughing:  www.dielaughing.org 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                     

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     

Here at the end of 2025, it's time to measure our progress in the fight against Sarcoidosis -- and the news is good.  In this episode of the FSR Sarc Fighter Podcast, Tricha Shivas, the Chief of Staff and Strategy at the Foundation for Sarcoidosis Research, joins me to talk about huge strides in research funding, building the support community, Veterans' support, and even progress with lawmakers in Washington, D.C.  In short, this is a good time to be a sarc patient -- as more and more progress is being made and even more is coming in 2026.   Show Notes 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 #fmla #fmlaclarification #metformin