Shows
Sarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 157 | The Foundation for Sarcoidosis Research rises to the topThe Foundation for Sarcoidosis Research (FSR) is gaining national traction in the fight against sarcoidosis—championing research funding, patient rights, and access to treatment. In this episode, we dive into how FSR is helping patients receive the care they deserve while empowering the research community to develop new sarcoidosis treatments, therapies, and clinical breakthroughs.
We also explore how the Foundation protects and advocates for patients who choose to participate in sarcoidosis clinical trials. From advocacy to innovation, learn how the Foundation for Sarcoidosis Research is shaping the future of sarcoidosis care.
Listen in as FSR CEO...
2026-02-0942 min
Nets in the WaterWhat Catholic Teachers Are Really Saying | John Carlin | Catholic Ed from the Outside | Ep. 26What does Catholic education look like through the eyes of someone who talks to teachers every day—but doesn’t teach? In this episode of Nets in the Water, John Carlin, a key voice at Studio 3:16, shares what he’s learned from working with thousands of Catholic educators, the unique challenges they face, and why listening might be the most underrated tool in Catholic evangelization today.🔹 What Catholic teachers are really asking for🔹 An “outsider’s” perspective from someone inside many school conversations🔹 How Studio 3:16 supports schools in making faith fun and meaningful
2025-05-3042 minSarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 136 | A big Announcement for John and Sarah Bishop joins from halfway around the world to share her Sarcoidosis story.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:
2025-04-141h 18Sarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 133 | FSR funds new research and an email from New ZealandIn 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/ne...
2025-03-0332 minSarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 128 | A year of major accomplishments - and how you can help the Foundation for Sarcoidosis ResearchWe 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 w...
2024-12-1645 minSarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 127 | Mariza Löb Talks about her life with Cardiac SarcoidosisMariza 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/
...
2024-12-0258 minSarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 126 | When is Cardiac Sarcoisosis at its worst and FMLA clearance for clinical trialsIn 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 spee...
2024-11-1937 minSarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 125 | All about our session with the FDA as the Sarc community makes its case.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 epis...
2024-11-0431 minSarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 124 | FSR CEO Mary McGowan on how we are taking the sarcoidosis message to the FDAOn 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 Podca...
2024-10-2142 minSarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 123 | Stephanie Mizell is helping you beat Sarcoidosis while she struggles with her own sarc symptomsStephanie 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...
2024-10-071h 02Sarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 122 | Lindsay Lawrence was a surfer until sarcoidosis pulled her underLindsay 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
S...
2024-09-231h 01Sarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 121 | Wade Tomlinson needed a lung transplantThe 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...
2024-09-091h 17Sarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 120 | Dr. Kamal Bharucha is a researcher who found himself a heartbeat away from real troubleDr. 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...
2024-08-261h 09Sarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 119 | Jessica Soules deals with NeurosarcoidosisWhen 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...
2024-08-1255 minSarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 118 | Mark Steier -- Who wrote the Sarc Fighter theme song has an unpdate, and his wife Caeleigh goes long for FSRZombie 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 Ma...
2024-07-221h 20Sarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 117 | Renwick Brutus tried to write his own insurance policy. But sarcoidosis intervened.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-le...
2024-07-0858 minSarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 116 | Xentria has a drug - XTMAB-16 that shows promise in fighting SarcoidosisXTMAB-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 a...
2024-06-241h 09Sarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 115 | Sarc Fighter Andrea Maione has both sarcoidosis and long COVID. It's no party.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/UCHfIbq9thHPC8yr...
2024-06-0456 minSarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 114 | Influencer Jonathan Carlin uses YouTube and other social media for an FSR FundraiserIn 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...
2024-05-2152 minSarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 113 | Kinevant Sciences makes progress with its drug NamilumabIn 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 Cycle4sar...
2024-05-061h 03Sarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 112 | aTyr is getting closer to a new drug to fight sarcoidosis.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...
2024-04-2252 minSarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 111 | Mathew Hall hits the wall with sarcoidosis. And it's Sarcoidosis Awareness Month!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 shar...
2024-04-081h 03Sarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 110 | Walgreens is helping to fight SarcoidosisIn 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....
2024-03-2534 minSarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 109 | Sarcoidosis has not been kind to Laura Runge-GordonIn 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...
2024-03-111h 33Sarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 105 | Perry Montoya has traveled the world, but now he's on a new journey.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 Clinica...
2024-02-261h 12Sarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 107 | Mark Simbrowsky has a racing heart. Even when he's sitting still.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/3EUOx...
2024-02-261h 04Sarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 106 | Rachelle DeMaria just wants to launch her lifeRachelle 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://sarco...
2024-02-121h 02Sarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 104 | John Martin thought it was time to get his affairs in order.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 a...
2024-01-1551 minSarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 103 | Closure. Why we need it and why sarcoidosis won’t give it to us.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 mov...
2024-01-0159 minSarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 102a | Sherron Fantauzzi Is fighting the good fight.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.
S...
2023-12-291h 07Sarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 102 | Sherron Fantauzzi Is fighting the good fight.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...
2023-12-111h 07Sarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 101 | Andy Lacher has sarcoidosis in his lungs and his heart. Put he’s pushing on.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/c...
2023-11-2148 minSarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 100 | John Mockovciak is a caregiver and philospher when it comes to SarcoidosisJohn 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://atyr...
2023-11-071h 10Sarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 99 | How to meet NY Yankees great Bernie Williams, and FSR’s Manny Lozano on the power of the sarcoidosis communityIn 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 B...
2023-10-231h 10Sarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 98 | Dr. Nancy Lin is looking deep in our cells to find a way to diagnose SarcoidosisDr. 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...
2023-10-0959 minSarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 97 | Joel Rosen is fighting sarcoidosis and fighting for you at the same time.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 bec...
2023-09-2544 minSarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 96 | How effective is methotrexate? And Royce braves the miles and the weather for your cause!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 ar...
2023-09-1238 minSarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 95 | FSR awards Dr. Christen Vagts $150,000 for critical research, and John puts his sarcoidosis in perspective.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...
2023-08-2841 minSarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 94 | Tony Haskel returns to the podcast after a rough few months. And do pulmonary Sarc patients get a fair shake at transplant time?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: htt...
2023-08-1555 minSarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 93 | John tests his Sarcoidosis on assignemt on the U.S.- Mexico border with the National Guard.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...
2023-07-3143 minSarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 92 | Researcher Dr. Stephen Tilley on where we got sarcoidosisDr. 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...
2023-07-1755 minSarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 91| Promise from a new drug - and diagnosing neurosarcoidosis is hard.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 a...
2023-07-0340 minSarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 90 | Mathew Campbell ’s Sarc went from his lungs to his heart. And FSR Crystal Gala highlightsMatthew Campbell was trying to come back from a couple years of being out of shape, but his body seemed off somehow. His normal pep on the basketball court just wasn't there. What WAS there was sarcoidosis. Listen in as Matthew shares the story of how he gradually realized he was fighting way more than his fitness.
Show notes:
More on aTyr Pharma: https://atyrpharma.com/
Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq
Back episodes from folks at the gala:
Erica Courtenay Mann: https://podcasts.apple.com...
2023-06-191h 11Sarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 89 | What does your DNA have to do with Sarcoidosis? An FSR Town Hall.We don't know what causes Sarcoidosis, but we are getting closer and closer. A part of that research is coming from genetic experts at 23andMe. The genetics company has worked with thousands of people to study their DNA -- and to drill down to see if there is a connection between our genes and whether we get Sarcoidosis. Their findings were presented at an FSR Townhall forum hosted by Sarc Fighter Podcast Host John Carlin. The panelists include:
C. Ann Scott- Woman of Color Patient Advisory Committee, Foundation For Sarcoidosis Research, Dr. Courtney Montgomery- Director of the Sarco...
2023-06-051h 13Sarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 88 | MaryKay Reidenbach has been fighting the fight for 28 years.Sarc Fighter MaryKay Reidenbach has been fighting sarcoidosis for close to three decades. It's invaded so many parts of her body, it's hard to figure out where it's the worst. But she keeps plugging along, trying to live her best life, and largely doing so. Hear her story in this episode of the FSR Sarc Fighter Podcast.
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: htt...
2023-05-2246 minSarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 87 | Writer Rebeccca Stanfel on the Pain from Sarcoidosis and Legitimate Need for Opioids.Rebecca Stanfel is a Sarc Fighter who also happens to be a wonderful writer -- to the point that national publications share her work. She recently published a blog in the Huffington Post, where she talked about the pain from Sarcoidosis that was so bad, only opioids would give her relief. In a world where we now often shudder at the mention of these addictive drugs, Stanfel wrote that they were her only path forward and that they serve a necessary purpose in certain situations -- including hers.
That is not to say it wasn't a struggle or...
2023-05-0854 minSarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 86 | Betsy Bennett beat breast cancer - but Sarcoidosis arrived shortly after.Betsy Bennett is fighting Sarcoidosis. That might seem easy after breast cancer led to a double mastectomy. But now the fatigue and ongoing battle with Sarc are taking a big toll on her quality of life. Listen in as she shares the story of how she thought she was disease free for just a brief time.
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...
2023-04-241h 20Sarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 85 | An FSR Town Hall - Getting closer to the first ever drug designed to fight SarcoidosisThis podcast is a recording of the amazing town hall discussion looking at aTyr Pharma's drug that shows great promise as a replacement for prednisone for pulmonary sarcoidosis patients. In this discussion, we will hear from aTyr CEO Dr. Sanjay Shukla, FSR CEO Mary McGowan, Patient Jim Kuhn, and Dr. Shambhu Aryal - the Medical Director of the Inova Sarcoidosis Center. Together we look at the problems with the current therapies available to the sarcoidosis community, the frustration felt by both patients and physicians, and the promise of a drug called efzofitimod, which is now in Stage three clinical tr...
2023-04-101h 23Sarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 84 | A patient story to go along with Sarcoidosis Awareness month and how FSR is leading the fight.April is Sarcoidosis Awareness month and FSR has many ways that the community can participate -- with your photos, videos and even holding up signs. It's all part of making the world aware that Sarcoidosis is a problem -- and remember the squeaky wheel gets the grease. Well it's time to squeak! Joining me on the FSR Sarc Fighter podcast this week are FSR Director of Development Angela O'Malley, Senior communications and Marketing Director Cathi Davis, and FSR Board Member and sarc patient Craig Lipset. Hear Craig's story about how sarcoidosis slowed his life as a young executive, and how...
2023-04-0355 minSarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 83 | Tony Haskel thought his heart was healthy. Then came Sarcoidosis.Tony Haskel is an active person. From his home in Connecticut, he makes time to ski in Vermont and ride his bike in the hilly regions around his home. But one day he found he couldn't go. His heart wasn't functioning properly because sarcoidosis had found its way into his body and started blocking vital communications within his heart itself. In this episode of the Sarc Fighter Podcast, Tony shares how sarcoidosis has attacked him and how he is fighting back.
Show notes:
More on aTyr Pharma: https://atyrpharma.com/
Par...
2023-03-2746 minSarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 82 | Sam Wassel’s unexplained abdominal pain was sarcoidosis - plus Cycle4Sarc goes publicSam Wassel is a young wife and mother. She is also a long distance runner. But the hardest thing she's encountered recently is the pain in her abdomen. At first she thought it was a severe issue with her monthly cycle. But upon further review, it was sarcoidosis. Listen as she details the pain she experienced and the difficult path to diagnosis. Also in this episode, Sarc Fighter Royce Robertson returns with details about his sarc fundraiser Cycle4Sarc. He's undertaking a major bike ride -- even though he suffers from cardiac sarcoidosis to raise money for the Foundation for Sar...
2023-03-1358 minSarc Fighter: Living with Sarcoidosis and other rare diseasesBonus Episode | FSR Town Hall - Uncovering the Future of Sarcoidosis Treatment and Clinical TrialsThis is a special bonus episode of the FSR Sarc Fighter podcast. You will be listening to a town hall recorded on February 18, 2023, where the guests discuss how to get more people involved in clinical trials for medications pointed at treating sarcoidosis patients.
Guests include Mary McGowan CEO of the Foundation for Sarcoidosis Research, Dr. Divya Patel Director of Sarcoidosis and ILD programs at the University of Florida, Bill Gerhart, CEO of Kinevant Sciences inc., And Garrie Farrow FSR Patient Advocate and Women of Color committee member. FSR Sarc Fighter podcast host John Carlin served as moderator.
...
2023-03-061h 13Sarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 81 | Wade Tomlinson tries to walk away from sarcoidosis.Wade Tomlinson is a relatively young 49 years old - and he's already been suffering from sarcoidosis for nine years. Despite his reduced ability to breathe, he hits the trails every day, where he tried to log 15,000 steps. Sometimes even more. In Episode 81 he tells john how sarcoidosis crept up on him, somewhat disguised as allergies.
Show Notes:
More on aTyr Pharma: https://atyrpharma.com/
Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq
aTyr News Release: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-dosing-first-patient-pivotal-phase-3-efzo
...
2023-02-2052 minSarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 80 | John riffs on sarcoidosis clinical trial opportunities and ... DisneyIn Episode 80 of the Sarc Fighter podcast, we take it too sarcoidosis in two ways -- by learning how to join an important clinical trial and by living the fullest life we can despite the challenges sarcoidosis presents.
Show Notes
Kinevant Clinical Trial https://bit.ly/3DaVsR6
More about Kinevant: https://kinevant.com/about-us/
Help FSR further its mission by becoming an Alliance Volunteer: www.stopsarcoidosis.org/gsca-leaders/
Become s community outreach leader: https://www.stopsarcoidosis.org/gsca-leaders/
Webinar on becoming an...
2023-02-0631 minSarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 79a | Royce Robertson is Fighting Sarcoidosis from the seat of his bike!Royce Robertson is battling sarcoidosis, and he has a plan to do a cool, two-wheeled fundraiser. Royce has been dealing with sarcoidosis for years. In fact he was one of the first people I ever "met" who also had sarc. He reached out to me after I published a blog abut trying to ride my bike, while medications like Cytoxan and prednisone made it all but impossible. In this episode he shares the details of his battle with sarc, and his plans to take it to the disease from the seat of his bike.
Sho...
2023-01-231h 18Sarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 79 | Sarc Fighter Royce Robertson bares his sole while looking for a way to help fight SarcoidosisRoyce Robertson has been through the wringer with sarcoidosis. It's impacted his heart in ways that impact every other aspect of his life. And yet he is scheming for a way to help all of us fight the disease by doing something he loves -- even though sarcoidosis is trying to stand in the way.
Show Notes:
More on aTyr Pharma: https://atyrpharma.com/
Participate in the aTyr Clinical Trial: https://bit.ly/3EUOxNq
aTyr News Release: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-dosing-first-patient-pivotal-phase-3-efzo
2023-01-161h 18Sarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 78 | Dr. John Belperio at UCLA has done a deep dive into the state of Sarcoidosis.Dr. John Belperio has been looking at dozens of studies on sarcoidosis, drilling down and figuring out exactly where medical science is with respect to pulmonary sarc. How often is it fatal? What are the best treatments? What can we say about the way sarcoidosis attacks the body? He's published his review in JAMA, the Journal of the American Medical Association, and now shares his findings here on the FSR Sarc Fighter podcast!
Show Notes
Kinevant Clinical Trial https://bit.ly/3DaVsR6
More about Kinevant: https://kinevant.com/about-us/
2023-01-0254 minSarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 77 | Covid Vaccines and Sarcoidosis: Surprising new research from the University of Illinois ChicagoDoctors Christian Ascoli and Christen Vagts have done some of the most in-depth research yet when in comes to Sarcoidosis and Covid-19 vaccines. Do they protect Sarc Fighters from the virus? It's a good question, since there is strong evidence to suggest that vaccines against some other diseases are only marginally effective or not effective at all in sarc patients. Doctors Ascoli and Vagts went beyond a study of outcomes, and took a look deep inside the body to see what happens when sarc patients try to fight off the Covid-19 virus. In this episode of the Sarc Fighter Podc...
2022-12-1941 minSarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 76 | Leeanne West is a scientist who discovered Sarcoidosis in her own life.Leanne West felt a bump behind her ear. It was the beginning of her journey with Sarcoidosis that has lasted for over a decade and lingers to this day. In this episode of the FSR Sarc Fighter Podcast, Leeanne, who has an amazing career as a researcher at Georgia Tech, talks about how Sarcoidosis has spread throughout her body, and how she keeps it at bay as best she can.
Show Notes
Kinevant Clinical Trial https://bit.ly/3DaVsR6
More about Kinevant: https://kinevant.com/about-us/
The FSR...
2022-12-0552 minSarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 75 | FSR Leaders Dr. Louise Perkins and CEO Mary McGowan on all the current progress.FSR Board chair Dr. Louise Perkins and CEO Mary McGowan say we are closer than ever to major breakthroughs in the treatment of Sarcoidosis. In Episode 75 of the FSR Sarc Fighter Podcast, they join me to talk about all the progress that is being made on may fronts -- and how we can all participate in keeping the momentum going.
Show Notes:
Kinevant Clinical Trial https://bit.ly/3DaVsR6
More about Kinevant: https://kinevant.com/about-us/
FSR Snowflake Stories: https://www.stopsarcoidosis.org/snowflake-stories/
The FSR ACTe n...
2022-11-211h 12
Sarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 74 | A Doctor and Two Sarc Fighters Urge Black Americans to Join Clinical TrialsIn Episode 74 of the Sarc Fighter Podcast we take a deep dive into the reality that Sarcoidosis in more prevalent in people of color, but they are less likely to participate in clinical trials. That's a problem for medical professionals who are trying to help solve the sarcoidosis riddle, to find more effective treatments and help more people.
Why is that?
Three guests join me today to talk about it. They share their thoughts and ideas about the reluctance of patients to participate often because of trust issues, and bias on behalf of medical professionals to...
2022-11-071h 04
Sarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 73 | FSR is looking for a few good volunteers. Maybe you.The Foundation for Sarcoidosis Research is looking for people who want to help in the fight. In 2022 FSR announced the Global Sarcoidosis Clinic Alliance - a member program of clinics, hospitals, and individual providers committed to finding a cure and offering evidence-based, patient-centric care for those living with sarcoidosis. These providers, such as the Cleveland Clinic, are among the top care centers for Sarcoidosis in the United States.
FSR is looking for the right people to lead support groups and other patient-focused activities at each center. In this episode of the Sarc Fighter podcast, Mindy Buchanan of FSR a...
2022-10-2459 minSarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 72 | Sarc Fighter Regina Gordon shares her battle.In Episode 72 of the Sarc Fighter podcast, Regina Gordon, an FSR Advocate shares the story of how sarcoidosis has curtailed her life for decades. She bravely shares how the disease has spread from her lungs to her skin and lymph nodes and other parts of her body. But she is not willing to give up. She's improved her outlook and even earned two college degrees. Listen in to hear how she is getting it done! And be sure to listen at the end when she shares a poem she wrote about the battle!
Above...
2022-10-1949 minSarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 71 | Andrew Brandt is fighting back - for all of us.Andrew Brandt has been suffering from sarcoidosis for more than five years. Lungs. Nervous system. Skin. And yet, he runs every day. And by that, I mean EVERY day. No matter how bad he feels. He will reveal his impressive streak during the interview. In the meantime, he is using programs offered by his company -- and his leadership skills, to raise serious money for the Foundation for Sarcoidosis Research. In this episode of the FSR Sarc Fighter podcast, Andrew tells his story, and we will also hear from FSR Development Director Angela Freelander, who will not only thank Andrew...
2022-09-2657 minSarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 70 | Laura Ward thought she had cancer... but it was sarcoidosis.Sarc Fighter Laura Ward has been fighting sarcoidosis for three years. Her first inclination that something was wrong happened at Yankee stadium, when she had trouble walking up to her seat. Initial tests showed she had lymphoma. But upon further review, it was pulmonary sarcoidosis. That led to issues with prednisone and other life challenges that she shares in Episode 70 of the FSR Sarc Fighter podcast.
Show Notes
#Makeitvisible https://www.stopsarcoidosis.org/fsr-updates-and-publications/
Kinevant
www.kinevant.com
www.sarcoidosistrial.com
ClinicalTrials.gov listing for RESOLVE-Lung: https://clinicaltrials.gov/ct2/show...
2022-09-121h 07Sarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 69 | Kinevant Sciences is researching namilumab – a potential new drug for sarcoidosisKinevant Sciences is researching a potential new drug for sarcoidosis - namilumab – which inhibits one of the key proteins believed responsible for granuloma formation and persistence in sarcoidosis.
In Episode 69 of the FSR Sarc Fighter Podcast, Kinevant CEO Bill Gerhart and Director of Patient Advocacy, Rayne Rodgers discuss the status of namilumab, and how you as a sarcoidosis patient can participate in the Phase 2 clinical trial, RESOLVE-Lung.
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
Cli...
2022-08-291h 04Sarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 68 | Profound thoughts from a dying man.A retired businessman had everything, until doctors told him he had only weeks to live. It was cancer, not Sarcoidosis. But this man began posting profound thoughts on a forum. I have met him and talked about his success in business. I have an amazing amount of respect for what he's accomplished personally as well as professionally. So when I read his posts I saw pearls of wisdom that apply to those of us fighting sarcoidosis. I wanted to share some of those thoughts today on the podcast.
Show Notes
Want to learn more about the cl...
2022-08-1532 minSarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 67 | Kristi Hedge begins her sarcoidosis journey.Sarcoidosis patient Kristi Hedge is just beginning her journey with Sarcoidosis. Listen in as she details how she started feeling poorly. After multiple doctor visits they discovered she had a serious case with Sarc involvement in multiple organs.
Show Notes
All about the Summit: https://www.stopsarcoidosis.org/summit-2022/
Contact Mindy: mindy@stopsarcoidosis.org
How Efzofitimod works in the body https://atyrpharma.com/programs/atyr1923/
Want to learn more about the clinical trial for efzofitimod? https://atyrpharma.com/patients/clinical-trials/
aTyr Pharma News Rele...
2022-08-0140 minSarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 66 | Unveiling Possibilities - All about the upcoming Sarcoidosis Summit from the Foundation for Sarcoidosis ResearchEvery year the Foundation for Sarcoidosis Research presents a summit, where leading experts, patients and caregivers can gather to discuss what's going on with our illness. It's also a time to learn more about the latest research and to just be with others who get it. The summit is virtual this year, so you will join on line, but you still get to visit the Exhibit Hall, the plenary sessions, and have Q and A with doctors, researchers and the pharmaceutical companies which are now lining up with exciting research.
In this episode of the Sarc Fighter Pod...
2022-07-1837 minSarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 63 | The birds and finding contentednessWhen sarcoidosis invades your life and rearranges your priorities, it's hard to cope. Sometimes it's the little things.
Sarcoidosis makes most of us slow down. For some of us almost to a crawl. But even while we are slogging along there are ways to be content with our lives.
Here's my stab at it.
Show notes
Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk
The FSR Summit: https://www.stopsarcoidosis.org/events/fsrs-third-annual-virtual-sarcoidosis-education-summit-unveiling-possibilities/
The Mayo Clinic article: https://www.mayoclinic.org/hea...
2022-06-0636 minSarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 62 | Garrie Farrow had troubles wearing her cute shoes. The problem was in her lungs.Garrie Farrow has been fighting sarcoidosis for 15 years, and maybe longer. It has spread from her lungs to other parts of her body including her ears. Yet she is still working - and still fighting. In fact she spends a great deal of time helping other Sarcoidosis patients as well. In Episode 62 of the Sarc Fighter podcast, Garrie shares the story of how sarcoidosis started out in her lungs, how doctors may have mishandled the early diagnosis and how sarc has had a tragic impact on her family.
Show notes
Learn about the clin...
2022-05-231h 05Sarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 61 | Expectations and Happiness with SarcoidosisSarcoidosis patients have shared many stories with me here on the Sarc Fighter podcast. It got me thinking about expectations. What did we expect from our lives before sarcoidosis? What do we expect now? Do we ever expect to get our old lives back -- and how hard should we try to get there.
Managing expectations can be tough and perhaps frustrating. But it can also be fulfilling.
In Episode 61 of the Sarc Fighter Podcast, I dig in really listen to what some of my guests had to say and look at how they are choosi...
2022-05-0945 minSarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 60 | Jack Boepple’s cardiac sarcoidosis hit him like a linebacker. And he would know.Jack Boepple is a former Boston marathon runner. A dedicated Cyclist and a fisherman who disappears into the wilderness for a week every year with his canoe and camping supplies. But even all of that couldn't prevent sarcoidosis from attacking his heart. In Episode 60 of the Sarc Fighter podcast, Jack shares the story of how sarcoidosis knocked him back more than a few steps -- and how he never saw it coming -- even when he was in the hospital beating most of the tests.
Jack Cardioversion image
Sho...
2022-04-251h 06Sarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 59 | Angelica wants to know how her grandmother died.Angelica Gauptman's grandmother died from complications of sarcoidosis. Angelica is trying to figure out why. She believes it had something do with the combination of Vitamin D and Prednisone. To be clear there is no clinical evidence that proves a link. Angelica is a high school senior with more than your average get up and go. She has undertaken a survey of Sarc patients, and has gotten the attention of some top level researchers. Hear her story, and the heartbreaking way her grandmother passed in this edition of the Sarc Fighter Podcast.
Show Notes
Lear...
2022-04-1143 minSarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 58 | Time to get ready for Sarcoidosis Awareness Month!April is Sarcoidosis Awareness Month! In this episode of the Sarc Fighter podcast, three leaders from the Foundation for Sarcoidosis Research join me to talk about how the Foundation is working to raise awareness and some money for the fight, and how YOU can participate! Whether it's taking some extra steps or posting to social media with special hashtags -- it's important to help all of us in the battle for better health care and medications to fight sarc!
Remember these hashtags for April! #WhatIsSarcoidosis #MakeItVisible
Here is a link to all the activ...
2022-03-2847 minSarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 57 | Sarc Patient Robin Goble has lost her balance, but she’s fighting to keep her life upright.Sarcoidosis patient Robin Goble once lived an active life that included cycling, hiking and hanging out with her friends while helping to raise two teenage sons. Then sarcoidosis showed up in her life. Now she is trying to get past the problems and looking for answers while helping other sarcoidosis patients cope with their problems.
Universal Barriers Podcast: https://www.stopsarcoidosis.org/sarc-fighter-podcast/
More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/
Ignore No More https://www.stopsarcoidosis.org/ignore-no-more-foundation-for-sarcoidosis-research-launches-african-american-women-sarcoidosis-campaign/
Sarcoidosis Awareness Film: https://www.purpledocumentary.com/
N...
2022-03-141h 01Sarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 56 | Dr. Shu-Yi Liao wants to know how sarcoidosis moves in the body.Dr. Shu-Yi Liao is trying to answer the questions we all have about sarcoiodosis. How does it move within our bodies? And why do some people get it and others not? Beyond that, what can be done to stop or prevent the disease?
Show Notes
More about Dr. Shu-Yi Liao: https://www.nationaljewish.org/doctors-departments/providers/physicians/shu-yi-liao
Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk
Universal Barriers Podcast: https://www.stopsarcoidosis.org/sarc-fighter-podcast/
More on Universal Barriers https://www...
2022-02-281h 04Sarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 55 | Erica Courtenay-Mann Has Sarcoidosis on her Vocal Cords. But she is speaking out!Erica Courtenay-Mann was feeling tired all the time. Beyond tired. Fatigued and unmotivated, but nobody understood. It was the onset of sarcoidosis. After several attempts for treatment -- her doctor noticed her neck didn't look right. This is her story.
Show Notes
Universal Barriers Podcast: https://www.stopsarcoidosis.org/sarc-fighter-podcast/
More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/
Ignore No More https://www.stopsarcoidosis.org/ignore-no-more-foundation-for-sarcoidosis-research-launches-african-american-women-sarcoidosis-campaign/
Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk
Sarcoidosis Awareness Film: https://www.purple...
2022-02-141h 01Sarc Fighter: Living with Sarcoidosis and other rare diseasesBonus Episode | Universal Barriers in Dealing with a Chronic Disease: A Sarcoidosis PerspectiveIn this Bonus Episode of the Sarc Fighter podcast, listen in to the special seminar hosted by The Foundation for Sarcoidosis Research as a physician and two sarc patients look at barriers to health care that cannot be overcome unless we all begin to recognize that they are real and won't go away on their own. The discussion is led by Sarc Fighter host John Carlin.
Show Notes
More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/
Ignore No More https://www.stopsarcoidosis.org/ignore-no-more-foundation-for-sarcoidosis-research-launches-african-american-women-sarcoidosis-campaign/
Learn about the cl...
2022-02-071h 14Sarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 52 | Dr Divya Patel and Novartis are looking for a few good Sarc patientsAs we begin 2022, there is even more reason for hope. On this episode of the Sarc Fighter podcast, Dr. Divya Patel joins me. Dr. Patel explains the clinical trial process and describes the trial she is working on at the University of Florida in connection with the Foundation for Sarcoidosis Research.
Show notes
Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk
Sarcoidosis Awareness Film: https://www.purpledocumentary.com/
Nourish by Lindsey: https://www.nourishbylindsey.com/
Dr. Jinny Tavee's book, The Last Day of Su...
2022-01-311h 20Sarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 54 | Calvin Harris’ lungs are clogged with Sarcoidosis -- but he wants to run a marathon.Calvin Harris lives in New York City, where he balances his time working as a CFO with running and giving back to his community. He also writes a popular blog called Run Your Own Race. And that's what he is doing. In this episode of the Sarc Fighter podcast, Calvin talks about how he deals with all the medications he is taking to keep his sarcoidosis under control, while he trains for a marathon with his sights set on completing the famous New York City marathon in the near future.
Read Calvin's Blog https://sarcoidosisnews.com/c...
2022-01-1759 minSarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 53 | Reasons for hope in the fight against Sarcoidosis in 2022As we begin a new year it's time to take a look at what's ahead in 2022. Both for ourselves and for the sarcoidosis community at large. In episode 53 I take a look at what you can do to fight sarc in your own personal battle as you make your new year's resolutions, as well as a look t what researchers, doctors and others are doing to further the fight against the disease, whether it's a new medicine, sarcoidosis awareness or patient outreach.
Show notes
Sarcoidosis Awareness Film: https://www.purpledocumentary.com/
Nourish by Li...
2022-01-0341 minSarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 51 | Amy Whaley fights on through a life that was different than she imagined.Amy Whaley is a caregiver. Her husband, Bobby suffers from a severe case of sarcoidosis. They are fighting sarc together. In this episode of the Sarc Fighter podcast, Amy talks about her life, her role as a a caregiver and how life changed shortly after she and Bobby were married.
Amy is the first care giver to appear on the Sarc Fighter podcast. Like all caregivers, she is essential to the life of the person with Sarcoidosis. Without these loving people's sacrifice, we could not go on with our daily lives. It's important to note...
2021-12-201h 07Sarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 50 | Warren Robinson‘s father died suddenly. And the family struggled to find out why.Warren D. Robinson is a Television Producer with a law degree to boot. When his father suddenly died from sarcoidosis he decided he wanted to join the fight to help patients suffering from Sarc. In this episode of the Sarc Fighter podcast, Warren tells the story of how his father showed no signs of the disease until after his sudden death. Here was a man who lived to help others and always took great care of himself, from getting proper exercise to eating right and everything else healthy people do. Then one day he just didn't wake up.
2021-12-061h 04Sarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 49 | Adam Bernardi has sarc in all the wrong places.Adam Bernardi has a great job working in Hollywood. He's met some big name celebs, and even worked with them. He's edited or worked on projects you've likely seen. But none of that could prevent sarcoidosis from attacking his nervous system.
In Episode 49 of the Sarc Fighter podcast, Adam shares the story of how difficult it was for doctors to diagnose his sarcoidosis, and how the disease has shut down parts of his body that at times can cause embarrassing situations. Thanks to Adam for an honest and forthright discussion.
Read about the patie...
2021-11-2258 minSarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 48 | Dr. Jinny Tavee is a neurosarcoidosis specialist with a unique approach to fighting the diseaseDr. Jinny Tavee, the Chief, Division of Neurology at National Jewish Health clinic in Denver is one of the leading experts in the United States when it comes to neurosarcoidosis. Neuro sarc only affects a small percentage of all sarcoidosis patients, but her approach for treatment extends beyond those who are unfortunate enough to have sarc in their brain or spinal cord. In Episode 48 of the Sarc Fighter Podcast, Dr. Tavee delves into how your entire body, mind, and spirit can be engaged to help you overcome sarcoidosis-related issues.
More About Dr. Jinny Tavee https://ww...
2021-11-081h 08Sarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 47 | Women of Color Fight Back!African American Women are three times more likely to suffer from sarcoidosis than whites, and their sarcoidosis mortality rate is 13 times higher than Caucasians and 1.5 times higher than African American men.
Why?
What is going on with women of color that isn't happening in other groups? Why are they having a harder time than everyone else. There are multiple reasons, and the Foundation for Sarcoidosis Research is hoping to get to the bottom of it.
FSR has created the Women of Color Patient Advisory Committee and the Women of Color Clinical Advisory Committee to...
2021-10-2558 minSarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 46 | Lisa Pflug is early in her journey with neurosarcoidosis, but already suffering the effects.Lisa Pflug's hand started shaking one day and she couldn't make it stop. For months neither she nor her doctors could explain it. Then they started looking at her spinal cord, and they found the problem.
In this Episode of the Sarc Fighter Podcast, Lisa shares the story of her journey through sarcoidosis, from her shaking hand to life on prednisone and hopefully a better life thanks to Remicade.
Lisa is right handed and she is thankful sarcoidosis has only affected her left hand, allowing her to pursue her passion as a painter. Her...
2021-10-111h 00Sarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 45 | Fantastic results from trial of new sarcoidosis drug from aTyr PharmaAtyr Pharma has just released the results of a patient trial of a drug called aTyr 1923. The drug had shown early promise, and the trial more than verified that thinking.
Atyr 1923 Not only allowed patients to dose down or even off of Prednisone, but it actually improved lung function in patients -- something that is rarely if ever accomplished.
In this episode of the Sarc Fighter podcast, aTyr President and CEO, Dr. Sanjay Shukla joins me to talk about the results, the meaning behind the trial and what happens next, as this leading edge science a...
2021-09-271h 05Sarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 44 | Brandi Cleaver faces down what may be a terminal case of sarcoidosis.Living in a rural area can be tough when you are faced with a rare disease like sarcoidosis. So Imagine living in remote North Dakota and trying to find a diagnosis and medical care. That is the case for Brandi Cleaver. At one point she and her friends held fundraisers in order to get her to Cleveland and the care she needed. At one point in her life Brandi was one of those people who showed up on horseback during search and rescue operations. Now, she is stuck at home most of the time, practicing self care and raising her s...
2021-09-1348 minSarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 43 | Joe McCorry has been fighting Sarcoidosis for a long, long time.Maybe we could call it "sarcoidosis creep." For people who have chronic sarc, it seems like if it doesn't get better, it slowly gets worse. When that happens, people's lives change. Their activities become more and more curtailed. Usually because their health is declining. That's what happened to Joe McCorry of Chicago. In this episode of the Sarc Fighter podcast, Joe talks about how sarc has taken over different organs in his body and how it's forced him to slow his life to a crawl.
The latest blog from Charlton Harris: https://sarcoidosisnews.com/2021/08/23/dont-have-anything-prove-with-sarcoidosis/
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2021-08-301h 06Sarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 42 | Juliet Coffer can barely walk without losing her breath. But she was determined to step up to fight sarcoidosis.Juliet Coffer lives in a cottage in the UK. By her description, it is a small home, yet her lungs only permit her to take a few steps at a time without running out of oxygen. In this episode, Juliet describes what it is like to push on when every breath seems to be an adventure. But not only that -- she has found a way to get around her house in a way that has raised tens of thousands of dollars to fight the disease.
Learn more about her remarkable spirit in this episode of the Sar...
2021-08-161h 11Sarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 41| Dr. Matt Baker is researching a promising new drug to fight sarc at Stanford University.Dr. Matt Baker at Stanford University is studying Sarilumab also known as KEVZARA as a treatment for sarcoidosis. Sarilumab is already approved for rheumatoid arthritis, but it's anti-inflammatory properties make it a great candidate to treat sarcoidosis as well.
In this interview, Dr. Baker explains in layman's terms how Sarilumab works in your body to keep the autoimmune process from creating inflammation, which in turn causes many of the problems people suffer with sarcoidosis.
Matt Baker's bio and info: https://profiles.stanford.edu/matthew-baker
Matt's research on Sarcoidosis: https://www.stopsarcoidosis.o...
2021-08-0257 minSarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 40 | Writer Rebecca Stanfel is bringing the sarcoidosis message to the masses. And, man, does she know the story.Rebecca Stanfel has been dealing with sarcoidosis for 17 years. Not just dealing with it, but at times, barely hanging on. All of this from a once world class cyclist, wife and mother who happens to have an amazing gift for writing. Her essays on living with sarcoidosis while struggling with the pandemic have been published in the Washington Post and HuffPost.
During the pandemic, Rebecca moved away from her family for eight months -- to ensure her immune system would not be compromised by her husband and son who were not able to quarantine simply due...
2021-07-191h 05Sarc Fighter: Living with Sarcoidosis and other rare diseasesBonus Episode | Sarcoidosis and COVID-19 Presented by the Foundation for Sarcoidosis ResearchWith vaccines for COVID-19 now available, Sarcoidosis Warriors are rightfully concerned about how the vaccines might impact them. Will they interact negatively with my condition or my medications? Can the vaccine trigger a flare? Will the vaccine work if I'm immune suppressed?
Sarc Fighter Podcast Host John Carlin interviews two leading doctors to get answers to your questions. Dr. Peter Sporn, the Director of the Northwestern University Sarcoidosis Center of Excellence and Dr. Wonder Drake of Vanderbilt University School of Medicine answer all of your questions and concerns.
Don't forget the upcomi...
2021-05-311h 09Sarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 34 Lindsey Norenberg on how to eat to beat inflammation.
Sarcoidosis at some level, is inflammation in our bodies -- where we don't want it and where it can cause permanent damage to our organs. One theory in fighting it, is to eat healthy foods i.e. those foods like sugar, grains and dairy that are known to cause inflammation. Lindsey Norenberg watched her husband struggle with cardiac sarcoidosis, and she decided to change careers after seeing the healing effects of proper eating. In this epidose of the Sarc Fighter podcast, Lindsey talks about how she helped her husband, and is helping me to find a path to better eating.
Stro...
2021-04-261h 10Sarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 33 | John Riffs on an encounter with a Doc who is not Sarc Aware!As part of Sarcoidosis Awareness month, I wanted to tell you a personal story that happened just today, the day before World Sarcoidosis Awareness day -- in which a very good doctor had no knowledge of sarcoidosis... And how this might have an impact on my own diagnosis with a new medical problem. I'll also give you an update on how the Elimination Diet is going and lots of ways you can participate in Sarcoidosis Awareness Month!
FSR's fantastic page that includes the media tool kit! https://www.stopsarcoidosis.org/awareness/
April 1 – April...
2021-04-1240 minSarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 32 | April is Sarcoidosis Awareness month! Tricha Shivas tells us how to fight back!April is the month we all re-double our efforts to let the world know we are here. To tell the world that sarcoidosis exists, that it's a problem. That it's a disease with no known cause or cure and that it messes with our lives in often unspeakable ways. Defense number one for this disease is the Foundation for Sarcoidosis Research. In April the Foundation is pulling out all the stops to shout it from the rooftops -- and you can help! FSR VP for Research and Strategic Partnerships Tricha Shivas joins me on this episode of the Sarc Fight...
2021-04-0550 minSarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 31 | Susan Bassi's Life slowed to a crawl when Sarcoidosis made its appearance.Sarc Fighter Susan Bassi was a very active outdoors person who once thought nothing of hiking 10 miles. Then Sarcoidosis raised its ugly head, and today she is trying to adjust to a life where she can no longer pursue her greatest joys.
Susan is an Advocate for the Foundation for Sarcoidosis Research, helping other patients find their way through the disease. And she brings special insight to the task because she is living it. Listen in as she talks about how sarc showed up in her joints and just kept spreading.
Don't Forget April is Sarc...
2021-03-291h 14
Sarc Fighter: Living with Sarcoidosis and other rare diseasesEpisode 1 My Sarcoidosis StoryJohn Carlin launches the Sarc Fighter podcast, by sharing the story of how sarcoidosis has taken over his life -- and how he is fighting back. From the drugs that worked to those that didn't - and the ones that made his life miserable, John shares the trials and tribulations that people with sarcoidosis face every day.
John's bike blog including a series of posts on cycling with sarcoidosis. www.carlinthecyclist.com
The Foundation for Saroidosis Research https://www.stopsarcoidosis.org/
Contribute to John's KISS account -- Kick in to Stop Sarcoidosis https://stops...
2020-02-0855 min