PODCAST

Sarc Fighter: Living with Sarcoidosis and other rare diseases

John Carlin

Fighting sarcoidosis as well as other rare diseases.

health & fitness medicine

All Episodes

57:06

Episode 131| A well-designed and successfully...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2025/01/27

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

32:25

Episode 130 | New Year, New Life.

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2025/01/13

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

01:01:41

Episode 129 | Karen Coleman is a dancer who had to...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2024/12/30

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:

45:02

Episode 128 | A year of major accomplishments - and...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2024/12/16

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

58:12

Episode 127 | Mariza Löb Talks about her life with...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2024/12/02

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

37:14

Episode 126 | When is Cardiac Sarcoisosis at its...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2024/11/19

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

31:29

Episode 125 | All about our session with the FDA as...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2024/11/04

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

42:59

Episode 124 | FSR CEO Mary McGowan on how we are...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2024/10/21

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

01:02:37

Episode 123 | Stephanie Mizell is helping you beat...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2024/10/07

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

01:01:32

Episode 122 | Lindsay Lawrence was a surfer until...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2024/09/23

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

01:17:38

Episode 121 | Wade Tomlinson needed a lung transplant

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2024/09/09

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

01:09:19

Episode 120 | Dr. Kamal Bharucha is a researcher who...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2024/08/26

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

55:37

Episode 119 | Jessica Soules deals with Neurosarcoidosis

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2024/08/12

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

01:20:07

Episode 118 | Mark Steier -- Who wrote the Sarc...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2024/07/22

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

58:00

Episode 117 | Renwick Brutus tried to write his own...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2024/07/08

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

01:09:47

Episode 116 | Xentria has a drug - XTMAB-16 that...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2024/06/24

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:

56:23

Episode 115 | Sarc Fighter Andrea Maione has both...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2024/06/04

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

52:35

Episode 114 | Influencer Jonathan Carlin uses YouTube...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2024/05/21

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

01:03:17

Episode 113 | Kinevant Sciences makes progress with...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2024/05/06

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:

52:21

Episode 112 | aTyr is getting closer to a new drug to...

Sarc Fighter: Living with Sarcoidosis and other rare... ·

2024/04/22

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

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Sarc Fighter: Living with Sarcoidosis and other rare diseases

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