Sarc Fighter: Living with Sarcoidosis and other rare diseases

On Episode 143 of the FSR Sarc Fighter Podcast, I have two guests. Taylor Harwood, Senior Research Coordinator for FSR, joins me to explain the new and improved patient registry.  Even if you've already registered, there is a small step you need to take to ensure researchers can find and use your valuable information.  Also joining me is physical therapist Marion Paetznik, who will tell you why it's so important to get or stay movi...

Dr. Courtney Montgomery wants to know what causes sarcoidosis.  She's convinced it's in your genes.  Working in the clinic at the Oklahoma Medical Research Foundation, she sees patients every week, while she studies the potential link between Sarcoidosis and a person's genetic code.  In this episode of the FSR Sarc Fighter Podcast, she goes over the reasons she believes that certain people are more likely than others to develop thi...

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 diffi...

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 te...

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 A...

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 he...

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...

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 ou...

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"...

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...

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 sarcoidos...

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 meaning...

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 h...

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 th...

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-k...

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-Sa...

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 t...

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...

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...