In this episode Royce Robertson joins me to talk about how he's raising money to make it easier for Sarcoidosis patients to travel to and from their appointments. It can be expensive to travel great distances to the right doctor, as he knows first-hand. Royce and I are also part of a panel discussion on exercise and sarcoidosis coming up at the FSR Summit on June 28. I will also share some personal details about a bit of a difficult time I'm experiencing at a personal level. #sarcoidosis #sarcoi...
Jun 23, 2025•39 min•Ep. 153
If there is one place to meet other sarcoidosis patients and to get your questions answered, from insurance denials to sex after sarc, it's at the 2025 FSR Global Virtual Sarcoidosis Summit. The Summit is happening on June 28th and 29th. And the deadline to sign up is June 14. Joining me on the show today are Elise Hoover, VP for Research at FSR, and Kristen Vargas, who is the Planning Lead for the event. Together, they will tell you everything you need to know and what to expect at this year's ...
Jun 09, 2025•50 min•Ep. 152
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...
May 26, 2025•46 min•Ep. 151
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 Su...
May 15, 2025•1 hr 10 min•Ep. 150
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 ra...
Apr 28, 2025•1 hr 1 min•Ep. 149
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 ot...
Apr 14, 2025•1 hr 18 min•Ep. 148
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...
Apr 07, 2025•59 min•Ep. 147
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:/...
Mar 31, 2025•55 min•Ep. 146
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...
Mar 17, 2025•53 min•Ep. 145
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 res...
Mar 03, 2025•33 min•Ep. 144
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 tha...
Feb 17, 2025•1 hr 1 min•Ep. 143
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 th...
Jan 27, 2025•57 min•Ep. 142
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 f...
Jan 13, 2025•32 min•Ep. 141
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-D...
Dec 30, 2024•1 hr 2 min•Ep. 140
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 camp...
Dec 16, 2024•45 min•Ep. 139
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/ Mindfulnes...
Dec 02, 2024•58 min•Ep. 138
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 ...
Nov 19, 2024•37 min•Ep. 137
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 meet...
Nov 04, 2024•31 min•Ep. 136
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 ye...
Oct 21, 2024•43 min•Ep. 135
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...
Oct 07, 2024•1 hr 3 min•Ep. 134
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. Lin...
Sep 23, 2024•1 hr 2 min•Ep. 133
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...
Sep 09, 2024•1 hr 18 min•Ep. 132
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...
Aug 26, 2024•1 hr 9 min•Ep. 131
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 sudden...
Aug 12, 2024•56 min•Ep. 130
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...
Jul 22, 2024•1 hr 20 min•Ep. 129
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...
Jul 08, 2024•58 min•Ep. 128
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://xe...
Jun 24, 2024•1 hr 10 min•Ep. 127
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 Instagra...
Jun 04, 2024•56 min•Ep. 126
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 epis...
May 21, 2024•53 min•Ep. 125
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-6...
May 06, 2024•1 hr 3 min•Ep. 124
