Podcast appearances and mentions of mark steier

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Best podcasts about mark steier

Latest podcast episodes about mark steier

Sarc Fighter: Living with Sarcoidosis and other rare diseases
Episode 139 | Dr. Sotonye Imadojemu talks about Sarcoidosis of the Skin.

Sarc Fighter: Living with Sarcoidosis and other rare diseases

Play Episode Listen Later May 26, 2025 46:25


In this Episode of the FSR Sarc Fighter Podcast Dr. Sotonye Imadojemu joins me to talk about sarcoidosis of the skin or cutaneous sarcoidosis.  It's very common, but we don't always talk about it.  sometimes it is it's own problem, and often it represents a hidden issue with sarcoidosis concerning additional organ involvement.  Dr. I is an expert working in Boston at Brigham and Women's Hospital.   Show Notes Sign up for the FSR Annual Summit on June 28, 29 https://www.stopsarcoidosis.org/sarcoidosis-summit/ Scholarship for the FSR Annual Summit:  https://apply.stopsarcoidosis.org/submit/c4b02fbd-d5e6-4013-9b11-d3a5957c2c89/2025-global-virtual-sarcoidosis-summit-scholarship-request-interest-form More on Dr. Imadojemu: https://physiciandirectory.brighamandwomens.org/details/13366/sotonye-imadojemu-dermatology-boston-chestnut_hill Kinderdijk: https://kinderdijk.com/ FSR brings the N95 Mask Game to people fighting the California wildfires: https://www.globenewswire.com/news-release/2025/04/02/3054169/0/en/Foundation-for-Sarcoidosis-Research-Joins-with-Walgreens-Cedars-Sinai-to-Provide-Foothill-Unity-with-Free-N95-Masks-to-Protect-Residence-Cleaning-Up-from-the-Recent-Los-Angeles-Wil.html The study reported in Sarcoidosis News:  https://sarcoidosisnews.com/news/28-gene-mutations-associated-sarcoidosis-risk-identified-study/   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 #sarcoidosis #sarcoidosisawareness                      

Sarc Fighter: Living with Sarcoidosis and other rare diseases
Episode 138 | Katie Pantea had a hard time even remembering her neuro sarcoidosis

Sarc Fighter: Living with Sarcoidosis and other rare diseases

Play Episode Listen Later May 15, 2025 70:10


Katie Pantea has multi-organ involvement of sarcoidosis.  But when it struck her nervous system, doctors struggled to diagnose her as she began to lose her memory of daily events.  In this episode of the FSR Sarc Fighter Podcast, Katie talks about how she's been able to fight back and piece together events that initially she could not recall.  It also helped that she is a nurse who lives near a sarcoidosis center that could give her the treatment she needed.   Show Notes Sign up for the FSR Annual Summit on June 28, 29 https://www.stopsarcoidosis.org/sarcoidosis-summit/ Scholarship for the FSR Annual Summit:  https://apply.stopsarcoidosis.org/submit/c4b02fbd-d5e6-4013-9b11-d3a5957c2c89/2025-global-virtual-sarcoidosis-summit-scholarship-request-interest-form FSR brings the N95 Mask Game to people fighting the California wildfires: https://www.globenewswire.com/news-release/2025/04/02/3054169/0/en/Foundation-for-Sarcoidosis-Research-Joins-with-Walgreens-Cedars-Sinai-to-Provide-Foothill-Unity-with-Free-N95-Masks-to-Protect-Residence-Cleaning-Up-from-the-Recent-Los-Angeles-Wil.html The study reported in Sarcoidosis News:  https://sarcoidosisnews.com/news/28-gene-mutations-associated-sarcoidosis-risk-identified-study/   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 #sarcoidosis #sarcoidosisawareness                  

Sarc Fighter: Living with Sarcoidosis and other rare diseases
Episode 137 | Dr. Brandon Moss of the Cleveland Clinic talks neuro sarcoidosis

Sarc Fighter: Living with Sarcoidosis and other rare diseases

Play Episode Listen Later Apr 28, 2025 61:20


In this Episode of the FSR Sarc Fighter podcast, Dr. Brandon Moss, Director of the Neuro Sarcoidosis Clinic at the Cleveland Clinic, talks about the unique challenges of neuro sarcoidosis.  Dr. Moss also happens to be my doctor.  I've told him he can use my situation as a case study for the sake of this discussion.  So you may hear a lot about my spinal cord.  Hey!  It's all for the greater good.  also in this episode, it's time to give to FSR. You can participate in a study by NORD -- dealing with rare diseases-- and the story of why FSR is involved with the cleanup after the California Wildfires in January. SHOW NOTES Participate in the Living Rare Study by NORD www.livingrarestudy.org. Sign up for the FSR Annual Summit on June 28, 29 https://www.stopsarcoidosis.org/sarcoidosis-summit/ Scholarship for the FSR Annual Summit:  https://apply.stopsarcoidosis.org/submit/c4b02fbd-d5e6-4013-9b11-d3a5957c2c89/2025-global-virtual-sarcoidosis-summit-scholarship-request-interest-form FSR brings the N95 Mask Game to people fighting the California wildfires: https://www.globenewswire.com/news-release/2025/04/02/3054169/0/en/Foundation-for-Sarcoidosis-Research-Joins-with-Walgreens-Cedars-Sinai-to-Provide-Foothill-Unity-with-Free-N95-Masks-to-Protect-Residence-Cleaning-Up-from-the-Recent-Los-Angeles-Wil.html More About Dr. Brandon Moss: https://my.clevelandclinic.org/staff/23790-brandon-moss 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 #sarcoidosis #sarcoidosisawareness                

Sarc Fighter: Living with Sarcoidosis and other rare diseases
Episode 136 | A big Announcement for John and Sarah Bishop joins from halfway around the world to share her Sarcoidosis story.

Sarc Fighter: Living with Sarcoidosis and other rare diseases

Play Episode Listen Later Apr 14, 2025 78:23


Sarah Bishop is busier than most people.  She is an ambitious runner, she is a police detective, and she loves the outdoors in New Zealand.  But she started having trouble doing even normal things.  She would get so tired and out of breath that her basic activity was nerly down to nothing.  But nobody could figure out what was wrong with her.  Sound familiar?  It was sarcoidosis.  Sarah heard the Sarc Fighter podcast and reached out saying she wanted to share her story in the hope that it would help other people.    Show Notes: FSR Virtual Support Group: https://www.stopsarcoidosis.org/fsr-sarcoidosis-support-group/ 2025 Awareness Month page: https://www.stopsarcoidosis.org/sarcoidosis-awareness-month/ Mindfulness & Meditation Wellness Webinar Series: https://www.stopsarcoidosis.org/wellness-webinar-series/   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 #sarcoidosis #sarcoidosisawareness          

Sarc Fighter: Living with Sarcoidosis and other rare diseases
Bonus Episode | Leaning in on equity in Clinical Trials

Sarc Fighter: Living with Sarcoidosis and other rare diseases

Play Episode Listen Later Apr 7, 2025 58:43


Bonus Episode of the FSR Sarc Fighter podcast.  In this bonus episode of the FSR Sarc Fighter podcast -- a reminder of the fantastic progress that has been made when it comes to making it possible for people to participate in clinical trials.  Thanks to the tireless work of the team at the Foundation for Sarcoidosis Research and the support of Mallinckrodt Pharmaceuticals and Boehringer-Ingelheim, it is now much easier to say "Yes" if you want to participate.  Thanks to their work, participation is now covered under FMLA - meaning you can take time off from work to go to the doctor or the clinic without fear of losing your job.  This is a huge win for researchers and all of us in the rare disease community.  Listen also as Sarc fighter Karen Colemen tells us how sarcoidosis has slowed her dancing.   Show notes: News Release on protection for clinical trial participants: https://www.globenewswire.com/news-release/2024/11/16/2982368/0/en/Foundation-for-Sarcoidosis-Research-FSR-receives-confirmation-from-the-Department-of-Labor-DOL-ensuring-patient-access-to-FMLA-for-participation-in-clinical-trials.html   Watch the Externally-Led Patient Focused Discussion before the FDA: https://www.stopsarcoidosis.org/pfdd/ MORE FROM JOHN: Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Biking 4 Boomers on Tic Tok. https://www.tiktok.com/@biking.4.boomers 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        

Sarc Fighter: Living with Sarcoidosis and other rare diseases
Episode 135 | April is Sarcoidosis Awareness Month!

Sarc Fighter: Living with Sarcoidosis and other rare diseases

Play Episode Listen Later Mar 31, 2025 54:31


April is Sarcoidosis Awareness Month, and it's time to let people know that we are all "Facing Sarcoidosis Together,"  which is the theme for 2025.  In this edition of the FSR Sarc Fighter podcast, I talk with Cathi Davis, Director of Communication and Marketing for FSR, along with fellow sarc fighters and volunteers Theresa Govan and Susan D'Agostino.  Hear about all FSR has planned for April and how sarcoidosis has impacted Susan and Theresa's lives. Show Notes: FSR Virtual Support Group: https://www.stopsarcoidosis.org/fsr-sarcoidosis-support-group/ 2025 Awareness Month page: https://www.stopsarcoidosis.org/sarcoidosis-awareness-month/ Mindfulness & Meditation Wellness Webinar Series: https://www.stopsarcoidosis.org/wellness-webinar-series/   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 #sarcoidosis #sarcoidosisawareness      

Sarc Fighter: Living with Sarcoidosis and other rare diseases
Episode 134 | Dr. Ravi Karra of Duke University discusses his research on Cardiac Sarcoidosis and its causes.

Sarc Fighter: Living with Sarcoidosis and other rare diseases

Play Episode Listen Later Mar 17, 2025 53:03


The Foundation for Sarcoidosis Research recently awarded two grants to further our knowledge of cardiac sarcoidosis.  One of them went to Dr. Ravi Karra, MD, MHS, Associate Professor of Medicine and Pathology at Duke University.  Dr. Karra is investigating what causes cardiac sarcoidosis, and the best way to treat it.  He joins me on the Sarc Fighter Podcast to talk about his findings and his theory as to what might cause sarcoidosis in some people.  Show notes: FSR awards two grants for research on cardiac sarcoidosis: https://www.stopsarcoidosis.org/fsr-doubles-investment-in-cardiac-sarcoidosis-research-with-200000-in-grants-to-advance-diagnostic-and-treatment-breakthroughs/ Duke University Sarcoidosis Clinic: https://medicine.duke.edu/divisions/pulmonary-allergy-and-critical-care-medicine/our-programs-and-centers/sarcoidosis-clinic 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 #sarcoidosis #sarcoidosisawareness #        

Sarc Fighter: Living with Sarcoidosis and other rare diseases
Episode 133 | FSR funds new research and an email from New Zealand

Sarc Fighter: Living with Sarcoidosis and other rare diseases

Play Episode Listen Later Mar 3, 2025 32:43


In this Episode of the FSR Sarc Fighter podcast, Spring has sprung in Virginia, and John is fueling his optimism for the season with news from the Sarcoidosis world, including a rare disease video series that spotlights sarcoidosis and the announcement of some major grants from FSR to Sarcoidosis researchers.   Show Notes: Watch the video featuring Kerry Wong and Dr. Al on how to deal with Sarcoidosis and talk about it in a meaningful way.  https://bionews.com/keepin-it-rare/ More about the FSR research Grants: https://www.globenewswire.com/news-release/2025/02/03/3019714/0/en/Foundation-for-Sarcoidosis-Research-FSR-Announces-300-000-in-Grant-Funding-to-Improve-Diagnosis-and-Treatment-of-Sarcoidosis.html   MORE FROM JOHN: Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Biking 4 Boomers on Tic Tok. https://www.tiktok.com/@biking.4.boomers 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 #sarcoidosis #sarcoidosisawareness #

Sarc Fighter: Living with Sarcoidosis and other rare diseases
Episode 132 | Dr. Arthur Yee on the history of sarcoidosis and a call out to rheumatologists everywhere

Sarc Fighter: Living with Sarcoidosis and other rare diseases

Play Episode Listen Later Feb 17, 2025 61:11


Dr. Arthur Yee of Hospital for Special Surgery in New York City, believes rheumatologists are uniquely qualified to treat Sarcoidosis -- yet many of them shy away from sarc patients.  In this episode of the FSR Sarc Fighter Podcast, Dr. Yee explains why sarc patients can be scary to doctors.  He also looks at the history of Sarcoidosis and the treatment patterns that have evolved over time.  He also explains what beryllium miners have in common with people who have had tattoos -- and how all of that relates to sarcoidosis.    Show Notes: More on Dr. Arthur Yee: https://www.hss.edu/physicians_yee-arthur.asp What is a TNF inhibitor: https://www.webmd.com/rheumatoid-arthritis/tnf-inhibitor-inflammation Why Rheumatologists need to be more active in treating Sarcoidosis Patients: https://www.the-rheumatologist.org/article/the-rheumatologists-role-in-sarcoidosis/?singlepage=1   MORE FROM JOHN: Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Biking 4 Boomers on Tic Tok. https://www.tiktok.com/@biking.4.boomers 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 #sarcoidosis #sarcoidosisawareness #          

Sarc Fighter: Living with Sarcoidosis and other rare diseases
Episode 131| The second best outcome in a clinical trial is one that didn't work.

Sarc Fighter: Living with Sarcoidosis and other rare diseases

Play Episode Listen Later Jan 27, 2025 57:06


Despite high hopes and promise from the drug Namilumab, Kinevant Sciences is reporting that the drug was not effective in treating Sarcoidosis.  A well executed clinical trail showed that the drug simply didn't make a difference for sarcoidosis patients.  In this episode of the FSR Sarc Fighter Podcast, two of the leaders at Kinevant join me to talk about the results of the clinical trial and to look at what science learned from the study.  Also joining me is FSR CEO Mary McGowan who helps shape the perspective of the outcome and to help us understand that while Namilumab did not turn out to be the drug we hoped, there is still a path forward in the fight against Sarcoidosis. Also have you seen the new Netflix mini-series in which one of the characters has Sarcoidosis called No Good Deed?  I have.  And I'll tell you what you need to know, without any spoilers. #sarcoidosis #namilumab #kinevant #sarcoidosisawareness #NoGoodDeed     Show Notes: News Release from Kinevant: https://investor.roivant.com/news-releases/news-release-details/roivant-announces-topline-results-phase-2-resolve-lung-study Watch the Externally-Led Patient Focused Discussion before the FDA: https://www.stopsarcoidosis.org/pfdd/ MORE FROM JOHN: Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Biking 4 Boomers on Tic Tok. https://www.tiktok.com/@biking.4.boomers 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    

Sarc Fighter: Living with Sarcoidosis and other rare diseases

It's early January and I'm starting a new job -- reflecting on both my early days and the days and years ahead -- while pondering what it all means with sarcoidosis lurking in the background.        Show notes: Kerry Wong on The new Netflix show No Good Deed:   https://sarcoidosisnews.com/columns/sarcoidosis-storyline-netflixs-no-good-deed-true-patients/ Kerry Wong appears on Episode 10: https://beatsarc.podbean.com/e/episode-10-kerry-wong-talks-about-how-sarc-stole-her-life/ News Release on protection for clinical trial participants: https://www.globenewswire.com/news-release/2024/11/16/2982368/0/en/Foundation-for-Sarcoidosis-Research-FSR-receives-confirmation-from-the-Department-of-Labor-DOL-ensuring-patient-access-to-FMLA-for-participation-in-clinical-trials.html Gratitude and Giving: https://stopsarcoidosis.rallybound.org/2024-gratitude-campaign/ Center in the Square in Roanoke: https://www.centerinthesquare.org/ Watch the Externally-Led Patient Focused Discussion before the FDA: https://www.stopsarcoidosis.org/pfdd/ MORE FROM JOHN: Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Biking 4 Boomers on Tic Tok. https://www.tiktok.com/@biking.4.boomers 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                      

Sarc Fighter: Living with Sarcoidosis and other rare diseases
Episode 129 | Karen Coleman is a dancer who had to slow her feet thanks to sarcoidosis

Sarc Fighter: Living with Sarcoidosis and other rare diseases

Play Episode Listen Later Dec 30, 2024 61:41


Sarcoidosis snuck up on Karen Coleman.  A dance instructor, she couldn't figure out why she wasn't keeping up in her jazzercize class.  After plenty of time with doctors and more CAT Scans than she would like, she discovered she was suffering from pulmonary Sarcoidosis.        Show notes: News Release on protection for clinical trial participants: https://www.globenewswire.com/news-release/2024/11/16/2982368/0/en/Foundation-for-Sarcoidosis-Research-FSR-receives-confirmation-from-the-Department-of-Labor-DOL-ensuring-patient-access-to-FMLA-for-participation-in-clinical-trials.html Gratitude and Giving: https://stopsarcoidosis.rallybound.org/2024-gratitude-campaign/ Holiday Pop-up Store: https://shop.printyourcause.com/campaigns/foundation-for-sarcoidosis-research-store/categories/crewnecks?accesstoken=fedd7e11-09bc-4960-9b41-68a91f851484 Center in the Square in Roanoke: https://www.centerinthesquare.org/ Watch the Externally-Led Patient Focused Discussion before the FDA: https://www.stopsarcoidosis.org/pfdd/ MORE FROM JOHN: Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Biking 4 Boomers on Tic Tok. https://www.tiktok.com/@biking.4.boomers 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        

Sarc Fighter: Living with Sarcoidosis and other rare diseases
Episode 128 | A year of major accomplishments - and how you can help the Foundation for Sarcoidosis Research

Sarc Fighter: Living with Sarcoidosis and other rare diseases

Play Episode Listen Later Dec 16, 2024 45:02


We are making progress against Sarcoidosis, whether it's new treatments or outreach to patients or even the FDA, the foundation for Sarcoidosis Research is making serious progress.  In this episode of the FSR Sarc Fighter Podcast,  Cathi Davis and Jennifer Bulandr join me to look back at all the advancements we have made in 2024 and they look ahead to what we can expect in 2025.  We will also talk about how FSR needs your support to continue to make these inroads, with its Gratitude and Giving campaign.  This is your chance to remember the organization that if fighting your cause as we reach the end of 2024!    Merry Christmas and Happy Holidays!    Show notes: Gratitude and Giving: https://stopsarcoidosis.rallybound.org/2024-gratitude-campaign/ Holiday Pop-up Store: https://shop.printyourcause.com/campaigns/foundation-for-sarcoidosis-research-store/categories/crewnecks?accesstoken=fedd7e11-09bc-4960-9b41-68a91f851484 News Release from Kinevant: https://investor.roivant.com/news-releases/news-release-details/roivant-announces-topline-results-phase-2-resolve-lung-study Watch the Externally-Led Patient Focused Discussion before the FDA: https://www.stopsarcoidosis.org/pfdd/ MORE FROM JOHN: Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Biking 4 Boomers on Tic Tok. https://www.tiktok.com/@biking.4.boomers 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    

Sarc Fighter: Living with Sarcoidosis and other rare diseases
Episode 127 | Mariza Löb Talks about her life with Cardiac Sarcoidosis

Sarc Fighter: Living with Sarcoidosis and other rare diseases

Play Episode Listen Later Dec 2, 2024 58:12


Mariza Löb was minding her own business, cooking dinner for her family when suddenly something wasn't right.  In this episode of the FSR Sarc Fighter podcast, Mariza talks about how paramedics took her to the hospital and her journey with sarcoidosis began. #sarcoidosis #sarcoidosis awareness #cardiacsarcoidosis @foundationforsarcoidosisresearch Show notes Sarcoidosis news report on cardiac sarcoidosis: https://sarcoidosisnews.com/news/poorer-outcomes-seen-isolated-cardiac-sarcoidosis/ Mindfulness The Sound of Silence with Susan D'Agostino https://www.stopsarcoidosis.org/wellness-webinar-series/ Department of Labor and Clinical Trial participation: https://www.stopsarcoidosis.org/fsr-receives-confirmation-from-the-department-of-labor-ensuring-patient-access-to-fmla-for-participation-in-clinical-trials/ My story on the Trump Rally:https://www.wsls.com/news/local/2024/11/03/local-representatives-speak-at-trumps-rally-in-salem/ Watch the Externally-Led Patient Focused Discussion before the FDA: https://www.stopsarcoidosis.org/pfdd/ MORE FROM JOHN: Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Biking 4 Boomers on Tic Tok. https://www.tiktok.com/@biking.4.boomers 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

Sarc Fighter: Living with Sarcoidosis and other rare diseases
Episode 126 | When is Cardiac Sarcoisosis at its worst and FMLA clearance for clinical trials

Sarc Fighter: Living with Sarcoidosis and other rare diseases

Play Episode Listen Later Nov 19, 2024 37:14


In this episode of the FSR Sarc Fighter podcast I share a new study from Japan that compared people with systemic cardiac sarcoidosis -- those people who have cardiac sarc as well as other organ involvement -- with those who have only cardiac involvement.  The research found that if you have it only in your heart it may actually be more serious.  Also, FSR just released information that will give you a sigh of relief if you want to participate in a clinical trial.   I also riff a bit about election night 2024, covering a Donald Trump rally, and a speech on the difficulty of sharing scientific data with the viewing public on TV news.   Show notes Sarcoidosis news report on cardiac sarcoidosis: https://sarcoidosisnews.com/news/poorer-outcomes-seen-isolated-cardiac-sarcoidosis/ Department of Labor and Clinical Trial participation: https://www.stopsarcoidosis.org/fsr-receives-confirmation-from-the-department-of-labor-ensuring-patient-access-to-fmla-for-participation-in-clinical-trials/ My story on the Trump Rally:https://www.wsls.com/news/local/2024/11/03/local-representatives-speak-at-trumps-rally-in-salem/ Watch the Externally-Led Patient Focused Discussion before the FDA: https://www.stopsarcoidosis.org/pfdd/ MORE FROM JOHN: Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Biking 4 Boomers on Tic Tok. https://www.tiktok.com/@biking.4.boomers 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

Sarc Fighter: Living with Sarcoidosis and other rare diseases
Episode 125 | All about our session with the FDA as the Sarc community makes its case.

Sarc Fighter: Living with Sarcoidosis and other rare diseases

Play Episode Listen Later Nov 4, 2024 31:29


In Episode 125 of the FSR Sarc Fighter Podcast, a look into the great success of the Externally Led Patient Focused Drug Development Meeting with the FDA.  John co-hosted the meeting with Mary McGowan, the CEO of the Foundation for Sarcoidosis Research as you - the sarcoidosis community joined in to share your stories with the FDA to let the policy and decision makers know what you are dealing with.  How hard it is to live with this disease and how few medicines are available to treat it.  The meeting happened Monday, October 28th in Washington, D.C..  In this episode of the podcast I'll give you a look behind the scenes as months of work came together in just a couple of days for a fantastic presentation to the FDA.  #sarcoidosis   Show notes Watch the Externally-Led Patient Focused Discussion before the FDA: https://www.stopsarcoidosis.org/pfdd/ Support Mark Steier's wife, Caeleigh:  https://stopsarcoidosis.rallybound.org/2024-team-rally-for-sarc/Team/View/193889/Team-Sarc-Mark   MORE FROM JOHN: Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Biking 4 Boomers on Tic Tok. https://www.tiktok.com/@biking.4.boomers 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

Sarc Fighter: Living with Sarcoidosis and other rare diseases
Episode 124 | FSR CEO Mary McGowan on how we are taking the sarcoidosis message to the FDA

Sarc Fighter: Living with Sarcoidosis and other rare diseases

Play Episode Listen Later Oct 21, 2024 42:59


On October 28th the Sarcoidosis world -- led by the Foundation for Sarcoidosis Research will have perhaps its best chance ever to tell the FDA what's going on with us.  On that day, FSR is leading an event called an Externally Led Patient Focused Drug Development discussion.  On that day from 10 am to 3 pm Patients, caregivers, medical experts and maybe you, will be telling the FDA what our lives are like.  How insufficient current medications can be.  And, how badly we deserve new treatments and yes even a cure for sarcoidosis.  In this episode of the FSR Sarc Fighter Podcast, FSR CEO Mary McGowan joins me to talk about this session with the FDA, what it looks like, why it's important and how you can join in.  Please give this podcast a listen -- and please sign up now to join in on October 28th. Show notes Join the Externally-Led Patient Focused Discussion before the FDA:  https://www.stopsarcoidosis.org/events/fsr-externally-led-patient-focused-drug-development-meeting/ Support Mark Steier's wife, Caeleigh:  https://stopsarcoidosis.rallybound.org/2024-team-rally-for-sarc/Team/View/193889/Team-Sarc-Mark   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

Sarc Fighter: Living with Sarcoidosis and other rare diseases
Episode 123 | Stephanie Mizell is helping you beat Sarcoidosis while she struggles with her own sarc symptoms

Sarc Fighter: Living with Sarcoidosis and other rare diseases

Play Episode Listen Later Oct 7, 2024 62:37


Stephanie Mizell has good days and bad days.  And she doesn't know what it will be until she wakes up and breathes.  Such is the life of a young mother with sarcoidosis.  Shortly after her diagnosis, Stephanie learned that FSR needed a person with her marketing talents.  She applied for the job -- and now she is helping all of us by spreading the word about sarcoidosis with her professionalism and skills.  Listen in as she tells how she learned of the job with the Foundation, and how she now uses all the tricks of the trade to make sure our social media presence is felt by as many people as possible.   Show notes Join the Externally-Led Patient Focused Discussion before the FDA:  https://www.stopsarcoidosis.org/events/fsr-externally-led-patient-focused-drug-development-meeting/ Sign up for FSR's 100-Mile Challenge: https://givp.nl/register/MGEluUUb  Support Mark Steier's wife, Caeleigh:  https://stopsarcoidosis.rallybound.org/2024-team-rally-for-sarc/Team/View/193889/Team-Sarc-Mark   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                  

Sarc Fighter: Living with Sarcoidosis and other rare diseases
Episode 122 | Lindsay Lawrence was a surfer until sarcoidosis pulled her under

Sarc Fighter: Living with Sarcoidosis and other rare diseases

Play Episode Listen Later Sep 23, 2024 61:32


Lindsay Lawrence was the picture of health.  Active, mother of two children, healthy eater. All the things.  But something just wasn't right.  It got worse and worse until her doctor told her that her lungs were being damaged by sarcoidosis.  In the time since diagnosis, she has been searching for the medications that work, while sarcoidosis creeps into other parts of her body.  In this episode of the FSR Sarc Fighter Podcast, Lindsay shares her story, including her terrible bout with prednisone.  Lindsey -- with facial swelling from prednisone.   Show Notes Sign up for FSR's 100-Mile Challenge: https://givp.nl/register/MGEluUUb  Support Mark Steier's wife, Caeleigh:  https://stopsarcoidosis.rallybound.org/2024-team-rally-for-sarc/Team/View/193889/Team-Sarc-Mark   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              

Sarc Fighter: Living with Sarcoidosis and other rare diseases
Episode 121 | Wade Tomlinson needed a lung transplant

Sarc Fighter: Living with Sarcoidosis and other rare diseases

Play Episode Listen Later Sep 9, 2024 77:38


The combination of Sarcoidosis and Covid proved too much for Wade Tomlinson.  His lungs were wracked with damage from sarcoidosis.  So when he got covid it was the punch his body couldn't handle and he needed to take drastic action.  Wade got on several waiting lists for a lung transplant and then waited for the call.  In episode 121 of the FSr Sarc Fighter Podcast, Wade recounts the moment the call came in and the series of events that led to him becoming a recipient.  Let's just say it wasn't clear-cut.  Listen in as Wade tell his story and brings up to date on how he is feeling six months after his surgery. Also in this podcast -- FSR's Stephanie Mizell joins me for a quick explaination of the Foundation's most recent fundraiser!   Show Notes: Sign up for FSR's 100-Mile Challenge: https://givp.nl/register/MGEluUUb  Wade's Go Fund Me: https://www.gofundme.com/f/support-wade-allie-medical-life-expenses?attribution_id=sl:1bcda970-9100-46d6-884b-82c1a3ee4239&utm_campaign=man_sharesheet_dash&utm_medium=customer&utm_source=copy_link   Support Mark Steier's wife, Caeleigh:  https://stopsarcoidosis.rallybound.org/2024-team-rally-for-sarc/Team/View/193889/Team-Sarc-Mark   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                              

Sarc Fighter: Living with Sarcoidosis and other rare diseases
Episode 120 | Dr. Kamal Bharucha is a researcher who found himself a heartbeat away from real trouble

Sarc Fighter: Living with Sarcoidosis and other rare diseases

Play Episode Listen Later Aug 26, 2024 69:19


Dr. Kamal Bharucha is a Pediatrician-Scientist, Clinical Development Leader and Biotech Startup Advisor in the rare disease space.  And suddenly he found himself dealing with a rare disease - sarcoidosis.  He says he was feeling fine and went for a routine check-up and discovered everything was far from fine.  Dr. Bharucha describes his journey through diagnosis and discovery as he fights back against the disease.  But what does a researcher do when presented with something like this?  They present a poster to colleagues urging them to consider pushing the use of heart rate monitors in more people -- so heart issues become apparent much sooner! Below is the poster he present to the American Thoracic Society entitled Multisystemic Sarcoidosis Culminating in Asymptomatic Complete Heart Block.         SHOW NOTES 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/ Kamal's Papers on Sarcoidosis:  https://link.springer.com/article/10.1007/s11606-021-07310-6 https://www.kevinmd.com/2023/08/heart-disease-in-the-shadows-a-closer-look-at-cardiac-sarcoidosis.html https://www.linkedin.com/in/kamal-bharucha/ Support Mark Steier's wife, Caeleigh:  https://stopsarcoidosis.rallybound.org/2024-team-rally-for-sarc/Team/View/193889/Team-Sarc-Mark 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                            

Sarc Fighter: Living with Sarcoidosis and other rare diseases
Episode 119 | Jessica Soules deals with Neurosarcoidosis

Sarc Fighter: Living with Sarcoidosis and other rare diseases

Play Episode Listen Later Aug 12, 2024 55:37


When it comes to sarcoidosis, one of the rarest forms is neurosarcoidosis or sarcoidosis in the nervous system.  That's what Jessica Soules is dealing with.  A long-time fitness instructor, sarc has taken the bounce out of her step.  In addition, Jessica is trying to spread the message of another rare disease that claimed the life of a friend.  In this episode she talks about her own struggles with sarcoidosis and a little about her group called Jonnie's Goodguys -- named after her friend who suddenly dropped dead one day while at work.   Show Notes: Jonnie's Goodguys: https://jonniesgoodguys.org/ Support Mark's wife, Caeleigh:  https://stopsarcoidosis.rallybound.org/2024-team-rally-for-sarc/Team/View/193889/Team-Sarc-Mark 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: Biking 4 Boomers https://www.youtube.com/@biking4boomers 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                

Sarc Fighter: Living with Sarcoidosis and other rare diseases
Episode 118 | Mark Steier -- Who wrote the Sarc Fighter theme song has an unpdate, and his wife Caeleigh goes long for FSR

Sarc Fighter: Living with Sarcoidosis and other rare diseases

Play Episode Listen Later Jul 22, 2024 80:07


Zombie is the theme song for the FSR Sarc Fighter podcast.  If you listen, you know.  Shortly after I launched the podcast Mark Steier e-mailed me to say he had sarcoidosis and had written and recorded a song about it.  I didn't expect much.  But the song blew me away, and Mark quickly agreed to allow me to use it as the theme song.  You've been hearing it ever since.  Meanwhile Mark's health has been up and down, sometimes seriously down.  And -- his wife and caregiver Caeleigh, is now stepping up and running the New York City Marathon as an official FSR fundraiser.  So she also joins me today. In addition, podcast "regular" Royce Robertson met me on a bicycling journey across New York State, where I interviewed him about his health and his own fundraising effort through cycle4sarc. It's a big Episode! Mark and Caeleigh!   Riding with Royce!   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/ Support Mark's wife, Caeleigh:  https://stopsarcoidosis.rallybound.org/2024-team-rally-for-sarc/Team/View/193889/Team-Sarc-Mark 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                

Sarc Fighter: Living with Sarcoidosis and other rare diseases
Episode 117 | Renwick Brutus tried to write his own insurance policy. But sarcoidosis intervened.

Sarc Fighter: Living with Sarcoidosis and other rare diseases

Play Episode Listen Later Jul 8, 2024 58:00


Renwick Brutus has an unusual name and a story to match.  He discovered he had sarcoidosis long ago now he's working through the disease and its complications.  Including the time doctors were ready to perform surgery on his brain only to... Well, I'll let Renwick finish the story.        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                

Sarc Fighter: Living with Sarcoidosis and other rare diseases
Episode 116 | Xentria has a drug - XTMAB-16 that shows promise in fighting Sarcoidosis

Sarc Fighter: Living with Sarcoidosis and other rare diseases

Play Episode Listen Later Jun 24, 2024 69:47


XTMAB-16, a drug now in clinical trials has been developed by Xentria.  In this episode of the FSR Sarc Fighter podcast, Noopur Singh, Vice President of marketing & Patient Affairs, and Tom Matthews, Vice President for Clinical Development join me to explain how XTMAB-16 works in the body as a "referee" to control our body's immune responses.  Listen in as we learn more about one of the most promising reasons for hope in the fight against Sarcoidosis.         Show notes: More about Xentria: https://xentria.com/who-we-are More about XTMAB-16: https://xentria.com/clinical/xtmab16 Join the Clinical Trial: https://xentria.com/clinical/xtmab16-phase-2 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                    

Sarc Fighter: Living with Sarcoidosis and other rare diseases
Episode 115 | Sarc Fighter Andrea Maione has both sarcoidosis and long COVID. It's no party.

Sarc Fighter: Living with Sarcoidosis and other rare diseases

Play Episode Listen Later Jun 4, 2024 56:23


In Episode 115 of the Sarc Fighter Podcast, Andrea Maione fights to keep things going as she deals with the aftermath of the pandemic while dealing with the increasing onset of Sarcoidosis symptoms.    Show Notes 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/ Super Carlin Brothers on YouTube: https://www.youtube.com/supercarlinbrothers Jonathan on Instagram: https://www.instagram.com/jonkerlin/ The Popcorn Culture Podcast: https://www.youtube.com/channel/UCHfIbq9thHPC8yrKjAdJgDA Through the Griffen Door Podcast:  https://podcasts.apple.com/us/podcast/through-the-griffin-door/id1708293199 Jonathan's fundraising page: https://stopsarcoidosis.rallybound.org/SuperCarlinBrothers Royce's Fundraising page: https://stopsarcoidosis.rallybound.org/cycle4sarc Matthew's Fundraising page: https://stopsarcoidosis.rallybound.org/Member/MyPage/2590390/Mathew-Hall The FSR Coalition for Clinical Trial Equity: https://www.stopsarcoidosis.org/fsr-launches-the-coalition-for-clinical-trial-equity-to-address-barriers-faced-by-black-patients/   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          

Sarc Fighter: Living with Sarcoidosis and other rare diseases
Episode 114 | Influencer Jonathan Carlin uses YouTube and other social media for an FSR Fundraiser

Sarc Fighter: Living with Sarcoidosis and other rare diseases

Play Episode Listen Later May 21, 2024 52:35


In Episode 114 of the FSR Sarc Fighter Podcast, a member of the Super Carlin Brothers shares how he is using his significant social media presence to raise money for the Foundation for Sarcoidosis Research.  Yes, that's Carlin -- the same name as mine.  In this case it's my oldest son Jonathan -- whose YouTube channel has more than 2-million subscribers.  Add to that a big presence on Tik Tok, Instagram, podcasts and other platforms and you have a way to reach, well -- a LOT of people.  In this episode Jonathan talks about why he wanted to do an FSR fundraiser, how it's going so far - and of course how YOU can help! I hope you'll listen in as Jonathan and I share a fun conversation about his idea and what it's like growing up, "Carlin!" Show Notes 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/ Super Carlin Brothers on YouTube: https://www.youtube.com/supercarlinbrothers Jonathan on Instagram: https://www.instagram.com/jonkerlin/ The Popcorn Culture Podcast: https://www.youtube.com/channel/UCHfIbq9thHPC8yrKjAdJgDA Through the Griffen Door Podcast:  https://podcasts.apple.com/us/podcast/through-the-griffin-door/id1708293199   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        

Sarc Fighter: Living with Sarcoidosis and other rare diseases
Episode 113 | Kinevant Sciences makes progress with its drug Namilumab

Sarc Fighter: Living with Sarcoidosis and other rare diseases

Play Episode Listen Later May 6, 2024 63:17


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                        

Sarc Fighter: Living with Sarcoidosis and other rare diseases
Episode 112 | aTyr is getting closer to a new drug to fight sarcoidosis.

Sarc Fighter: Living with Sarcoidosis and other rare diseases

Play Episode Listen Later Apr 22, 2024 52:21


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                    

Sarc Fighter: Living with Sarcoidosis and other rare diseases
Episode 111 | Mathew Hall hits the wall with sarcoidosis. And it's Sarcoidosis Awareness Month!

Sarc Fighter: Living with Sarcoidosis and other rare diseases

Play Episode Listen Later Apr 8, 2024 63:20


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                  

Sarc Fighter: Living with Sarcoidosis and other rare diseases
Episode 110 | Walgreens is helping to fight Sarcoidosis

Sarc Fighter: Living with Sarcoidosis and other rare diseases

Play Episode Listen Later Mar 25, 2024 34:40


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                  

Sarc Fighter: Living with Sarcoidosis and other rare diseases
Episode 109 | Sarcoidosis has not been kind to Laura Runge-Gordon

Sarc Fighter: Living with Sarcoidosis and other rare diseases

Play Episode Listen Later Mar 11, 2024 93:09


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      

Sarc Fighter: Living with Sarcoidosis and other rare diseases
Episode 107 | Mark Simbrowsky has a racing heart. Even when he's sitting still.

Sarc Fighter: Living with Sarcoidosis and other rare diseases

Play Episode Listen Later Feb 26, 2024 64:22


Mark Simbrowsky is a big-time runner.  He runs marathons.  But Sarcoidosis said, "Not so fast."  Mark suffers from cardiac sarcoidosis.  He went from being the fittest person in the room to a hospital bed, and nobody knew why.  Now after a long journey, he is returning to his old form -- but it hasn't been easy.  This episode of the Sarc Fighter Podcast is presented by aTyr Pharma.   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          

Sarc Fighter: Living with Sarcoidosis and other rare diseases
Episode 106 | Rachelle DeMaria just wants to launch her life

Sarc Fighter: Living with Sarcoidosis and other rare diseases

Play Episode Listen Later Feb 12, 2024 62:16


Rachelle DeMaria lives in Colorado Springs, where the scenery is beautiful and as they say, life is worth living.  Rachelle had just finished cosmetology school and was getting ready to open her business.  Then one day something in her back didn't feel right.  After exhaustive testing doctors diagnosed her with Sarcoidosis.  Her diagnosis came at the height of the pandemic -- which just made matters worse.  But now the nation is healing, but Rachelle is still struggling. 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 heart study reported in Sarcoidosis News:  https://sarcoidosisnews.com/news/heart-imaging-may-help-id-at-risk-cardiac-sarcoidosis-patients/ 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    

Sarc Fighter: Living with Sarcoidosis and other rare diseases
Episode 105 | Perry Montoya has traveled the world, but now he's on a new journey.

Sarc Fighter: Living with Sarcoidosis and other rare diseases

Play Episode Listen Later Jan 29, 2024 72:01


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          

Sarc Fighter: Living with Sarcoidosis and other rare diseases
Episode 104 | John Martin thought it was time to get his affairs in order.

Sarc Fighter: Living with Sarcoidosis and other rare diseases

Play Episode Listen Later Jan 15, 2024 51:21


In episode 104 of the FSR Sarc Fighter Podcast, John Martin talks about how a routine trip to the doctor stopped him in his tracks.  As is often the case is was a sarcoidosis related misdiagnosis.  The good news is that he does not have cancer as his doctor suspected.  On the other hand, sarcoidosis has dealt him a few setbacks and he must now live life differently.  Listen in as he shares the story of how everything changed.   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 heart study reported in Sarcoidosis News:  https://sarcoidosisnews.com/news/heart-imaging-may-help-id-at-risk-cardiac-sarcoidosis-patients/ 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    

Sarc Fighter: Living with Sarcoidosis and other rare diseases
Episode 103 | Closure. Why we need it and why sarcoidosis won't give it to us.

Sarc Fighter: Living with Sarcoidosis and other rare diseases

Play Episode Listen Later Jan 1, 2024 59:29


Happy New Year from the Sarc Fighter Podcast.  To start the year off, I have a look at a psychological concept called the Zeigarnic effect.  Don't worry about the big name, it will all make sense when you listen.  But it has to do with how your brain discards information it no longer needs to free up room to process other thoughts.  By doing this, it helps us reduce stress because our brains are not overloaded with clutter.  Makes sense right?  That's what closure is all about.  Ok -- that happened, I've dealt with it and I can move on.  But if you can't complete that thought loop or task, and it remains open -- then it lingers in your brain and drives you nuts!  In episode 103 of the Sarc Fighter podcast, I look into how that makes dealing with sarcoidosis difficult at best.  #zeigarnic Oh yeah -- and I'll tell you what this fish tank has do to with it too.     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/ The Freakonomics Podcast: https://freakonomics.com/podcasts/ 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      

Sarc Fighter: Living with Sarcoidosis and other rare diseases
Episode 102a | Sherron Fantauzzi Is fighting the good fight.

Sarc Fighter: Living with Sarcoidosis and other rare diseases

Play Episode Listen Later Dec 29, 2023 67:11


Sherron Fantauzzi knew something was wrong with her body.  After months of aligning the clues, doctors discovered it was sarcoidosis.  In Episode 102 of the FSR Sarc fighter podcast, Sherron brings her upbeat personality to the mic and talks about how she has balanced a job with the FAA, a local talk show, being a basketball referee, and sarcoidosis.  Note: I am re-uploading this podcast after discovering a bad edit in the first draft.  That's all on me.  Sorry for making you hear all kinds of stray audio on the first one.     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/ Sherron's Talk show "Small Talk" http://www.youtube.com/@small_taaalk541 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

Sarc Fighter: Living with Sarcoidosis and other rare diseases
Episode 102 | Sherron Fantauzzi Is fighting the good fight.

Sarc Fighter: Living with Sarcoidosis and other rare diseases

Play Episode Listen Later Dec 11, 2023 67:46


Sherron Fantauzzi knew something was wrong with her body.  After months of aligning the clues, doctors discovered it was sarcoidosis.  In Episode 102 of the FSR Sarc fighter podcast, Sherron brings her upbeat personality to the mic and talks about how she has balanced a job with the FAA, a local talk show, being a basketball referee, and sarcoidosis.     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/ Sherron's Talk show "Small Talk" http://www.youtube.com/@small_taaalk541 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/ Episode 36 Janet Mockovciak: https://beatsarc.podbean.com/e/episode-36-sarc-fighter-janet-mockovciak-is-giving-it-her-all/   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

Sarc Fighter: Living with Sarcoidosis and other rare diseases
Episode 101 | Andy Lacher has sarcoidosis in his lungs and his heart. Put he's pushing on.

Sarc Fighter: Living with Sarcoidosis and other rare diseases

Play Episode Listen Later Nov 21, 2023 48:43


Andy Lacher knew something wasn't right when his heart rate wasn't right on a bike ride with his wife.  It was the beginning of a year of doctor's visits until the ultimate diagnosis of sarcoidosis.     Show Notes: 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/ Episode 36 Janet Mockovciak: https://beatsarc.podbean.com/e/episode-36-sarc-fighter-janet-mockovciak-is-giving-it-her-all/   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  

Sarc Fighter: Living with Sarcoidosis and other rare diseases
Episode 100 | John Mockovciak is a caregiver and philospher when it comes to Sarcoidosis

Sarc Fighter: Living with Sarcoidosis and other rare diseases

Play Episode Listen Later Nov 7, 2023 70:45


John Mockovciak spends a lot of time helping his wife, Janet travel her sarcoidosis journey.  And for a couple who hike and ski and seek the lifestyle they've always wanted, it can be a lot of work for both of them.  Yet somehow they get down the mountains in the snow, and to the iconic places so many people want to visit.  But it takes a certain mindset and understanding, that John shares with listeners in this episode of the FSR Sarc Fighter Podcast.   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/ 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/ Episode 36 Janet Mockovciak: https://beatsarc.podbean.com/e/episode-36-sarc-fighter-janet-mockovciak-is-giving-it-her-all/   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

Sarc Fighter: Living with Sarcoidosis and other rare diseases
How to meet NY Yankees great Bernie Williams, and FSR's Manny Lozano on the power of the sarcoidosis community

Sarc Fighter: Living with Sarcoidosis and other rare diseases

Play Episode Listen Later Oct 23, 2023 70:46


In Episode 99 of the FSR Sarc Fighter podcast, we learn Yankees great Bernie Williams is using his remarkable talent as a musician to help people with Sarcoidosis.  We also meet Manny Lozano who is in charge of building the sarcoidosis community through FSR.  Manny spent more than 20 years in the Navy including some heavy duty tours.  Now he brings that perspective, and experience as a Navy Hospital Corpsman to our community as he helps to build alliances to strengthen the programs available to all of us.     Show Notes Attend the Bernie Williams event and the FSR Annual Summit: https://www.stopsarcoidosis.org/summit-2023/ 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/ 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 on Manny:  https://www.stopsarcoidosis.org/about/staff/   MORE FROM JOHN: John's Documentary from the U.S. Mexico border: https://www.wsls.com/video/news/2023/09/19/frontline-with-john-carlin--full-spec 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 me  carlinagency@gmail.com

Sarc Fighter: Living with Sarcoidosis and other rare diseases
Episode 98 | Dr. Nancy Lin is looking deep in our cells to find a way to diagnose Sarcoidosis

Sarc Fighter: Living with Sarcoidosis and other rare diseases

Play Episode Listen Later Oct 9, 2023 59:09


Dr. Nancy Lin at Johns Hopkins is working on a way to quickly diagnose Sarcoidosis - at last compared to the current ways it is being done.  She is looking at our micro RNA to see if there is something different in sarcoidosis patients.  Her research is being funded by a $150,000 grant from the Foundation for Sarcoidosis Research.  Not only does it appear promising, but it may one day open doors to a cure.  Listen to this fascinating conversation as Dr. Lin explores the root causes of sarcoidosis as far as we currently understand it. 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. Nancy Lin https://www.stopsarcoidosis.org/fsr-awards-2022-2024-sarcoidosis-research-fellowship-to-dr-nancy-lin-of-national-jewish-health/ (Note: Dr Lin recently moved from National Jewish Health to Johns Hopkins) Meet Olympic Cyclist Jennifer Valente: https://en.wikipedia.org/wiki/Jennifer_Valente       More on Kevin Moore's Sarc Battle:  https://voice.vumc.org/a-mysterious-heart-ailment-almost-killed-kevin-moore-it-took-a-vanderbilt-team-to-pull-him-through/ 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    

Sarc Fighter: Living with Sarcoidosis and other rare diseases
Episode 97 | Joel Rosen is fighting sarcoidosis and fighting for you at the same time.

Sarc Fighter: Living with Sarcoidosis and other rare diseases

Play Episode Listen Later Sep 25, 2023 44:13


Attorney Joel Rosen woke up one day and he wasn't feeling well.  He thought maybe it was a cold.  But he just couldn't get to feeling better.  That sent him through a series of tests that eventually led to a diagnosis of sarcoidosis.  As an attorney, he had already generously loaned his talents to several non-profits.  And now we can add the Foundation for Sarcoidosis Research to the list.  Joel is the newest board member for FSR, and in this episode of the Sarc Fighter podcast, he talks about how it took months to find a diagnosis and how he became more and more involved with the work FSR is doing to help patients cope, and researchers find treatments and maybe one day, a cure. 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 on Joel Rosen: https://highswartz.com/high-swartz-news/sarcoidosis-board-member/ 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 Documentary from the U.S. Mexico border: https://www.wsls.com/video/news/2023/09/19/frontline-with-john-carlin--full-spec 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 me  carlinagency@gmail.com                              

Sarc Fighter: Living with Sarcoidosis and other rare diseases
Episode 96 | How effective is methotrexate? And Royce braves the miles and the weather for your cause!

Sarc Fighter: Living with Sarcoidosis and other rare diseases

Play Episode Listen Later Sep 12, 2023 38:34


In Episode 96 of the FSR Sarc Fighter Podcast, fellow Sarc Fighter Royce Robertson returns to talk about his epic adventure while raising money for the cause.  Meanwhile a small study in Japan suggests methotrexate may not be the answer for some Cardiac Sarcoidosis patients.   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 The Methotrexate article: https://sarcoidosisnews.com/news/methotrexate-no-better-than-prednisolone-cardiac-sarcoidosis-poor-responders/ 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/ email Royce Robertson  roycelrobertson@gmail.com 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  

Sarc Fighter: Living with Sarcoidosis and other rare diseases
Episode 95 | FSR awards Dr. Christen Vagts $150,000 for critical research, and John puts his sarcoidosis in perspective.

Sarc Fighter: Living with Sarcoidosis and other rare diseases

Play Episode Listen Later Aug 28, 2023 41:21


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/ Episode 77 interview with Dr. Christen Vagts https://beatsarc.podbean.com/e/episode-77-covid-vaccines-and-sarcoidosis-surprising-new-research-from-the-university-of-illinois-chicago/ 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 me  carlinagency@gmail.com email Royce Robertson  roycelrobertson@gmail.com We all know how lousy sarcoidosis is.  How it messes with our lives and makes us wish it wasn't there.  It makes you wonder how you happened to be the one who was struck by lightning.  (Listen on for more on that analogy!)  Imagine a vacation where everything goes wrong -- or at least, not according to plans and dreams.  Add in some significant health issues by family members and you have the makings of a good story!  And a solid dose of perspective.  This was my vacation this summer.  Also, FSR has awarded Dr. Christen Vagts $150,000, to further her research is severe cases of pulmonary sarcoidosis.  Dr. Vagts was a guest on the FSR Sarc Fighter podcast in December of 2022.  There is a link to that episode below, if you would like to go back and listen.    John rides on the causeway from Burlington, Vermont.  The best part of his vacation!   Show Notes          

Sarc Fighter: Living with Sarcoidosis and other rare diseases
Episode 94 | Tony Haskel returns to the podcast after a rough few months. And do pulmonary Sarc patients get a fair shake at transplant time?

Sarc Fighter: Living with Sarcoidosis and other rare diseases

Play Episode Listen Later Aug 15, 2023 55:23


Tony Haskel first appeared on the podcast in March of 2023 - about five months prior to this recording.  At the time he knew he had sarcoidosis, but he didn't really know what was in store.  Now, months later he is much better acquainted with sarc, but still has an optimistic outlook.   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 Support Tony's fundraiser!  https://stopsarcoidosis.rallybound.org/TonyHaskel Tony's email: tony.haskel@gmail.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 me  carlinagency@gmail.com email Royce Robertson  roycelrobertson@gmail.com

Sarc Fighter: Living with Sarcoidosis and other rare diseases
Episode 93 | John tests his Sarcoidosis on assignemt on the U.S.- Mexico border with the National Guard.

Sarc Fighter: Living with Sarcoidosis and other rare diseases

Play Episode Listen Later Jul 31, 2023 43:37


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 me  carlinagency@gmail.com email Royce Robertson  roycelrobertson@gmail.com

Sarc Fighter: Living with Sarcoidosis and other rare diseases
Episode 92 | Researcher Dr. Stephen Tilley on where we got sarcoidosis

Sarc Fighter: Living with Sarcoidosis and other rare diseases

Play Episode Listen Later Jul 17, 2023 55:57


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 me  carlinagency@gmail.com email Royce Robertson  roycelrobertson@gmail.com                

Sarc Fighter: Living with Sarcoidosis and other rare diseases
Episode 91| Promise from a new drug - and diagnosing neurosarcoidosis is hard.

Sarc Fighter: Living with Sarcoidosis and other rare diseases

Play Episode Listen Later Jul 3, 2023 40:49


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 me  carlinagency@gmail.com email Royce Robertson  roycelrobertson@gmail.com