Fighting sarcoidosis as well as other rare diseases.

January 18, 2021

Episode 26 Amy Cobb is a Nurse Practitioner treating COVID Patients - And Fighting Sarcoidosis in Her Own Body.

In Episode 26 of the Sarc Fighter Podcast, Amy Cobb Describes how sarcoidosis is slowly taking over her body and to a certain extent - her life.  Amy is a mother of three who works full time as a nurse practitioner.  Now -- almost a year into the pandemic, she has been living with sarc, while treating patients fighting COVID-19.  In this episode, Amy talks about how she's been able to handle Sarc and a cabinet full of medication while trying to continue as a soccer mom and medical professional.

 

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More on the Sarcoidosis Documentary from Mission Purple.  https://www.facebook.com/Sarcoidawarenessfilm/

Atyr Pharma News Release https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-completion-enrollment-phase-1b2a-clinical

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!

If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier

You can listen on You Tube as well.  https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email me  carlinagency@gmail.com

Sarc Fighter Facebook Page  https://www.facebook.com/SarcFighter/

Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

 

January 4, 2021

Episode 25 Tracy Bawtinheimer was a world traveling executive until…

 

In Episode 25 of the Sarc Fighter podcast, patient Tracy Bawtinheimer tells the story of how sarc slowly damaged her heart until she had to make serious life changes.  At one point doctors told her she had a one percent chance of survival.  Yet she has found a way to prevail, even though the difficult learning curve of how to live a life after sarcoidosis. 

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More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!

If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier

You can listen on You Tube as well.  https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

FSR Summits 2020  https://www.stopsarcoidosis.org/patient-summits/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email me  carlinagency@gmail.com

Sarc Fighter Facebook Page  https://www.facebook.com/SarcFighter/

Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

December 28, 2020

Episode 24 Sarc Fighter Frank Rivera fights long Covid-19

Frank Rivera is one of the loudest voices in the Sarcoidosis community.  But COVID-19 didn't care.  It hit him with a vengeance, then it came back.

In Episode 24 of the Sarc Fighter Podcast, Frank talks about what doctors are calling "Long COVID"  because it just doesn't go away.

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Despite his condition, Frank continues to work as a volunteer, helping other sarc patients.  In fact, he recently formed a new outreach group called strongerthansarcoidosis.org  to help make it easier for people to get answers about doctors, medications and navigating the tangles mess that is too often between sarc patients and the care they need and deserve.

Stronger than Sarcoidosis  https://strongerthansarcoidosis.org/

Frank's Blog https://lifeasararepatient.blog/?fbclid=IwAR0YpnPmGOgXX6GKxG9SHwetjuye8G4cJCbErhV1yxHSBPf7cLukJSg4k2o

Frank on Facebook https://www.facebook.com/fjr311

Looking for previous episodes? https://www.stopsarcoidosis.org/sarc-fighter-podcast/

The Sarc Fighter Podcast is presented in part by a grant from aTyr Pharma.

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!

If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier

You can listen on You Tube as well.  https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email me  carlinagency@gmail.com

Sarc Fighter Facebook Page  https://www.facebook.com/SarcFighter/

Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

 

 

 

December 7, 2020

Episode 23 Even doctors can get sarcoidosis. Taufiq Ahmad shares the story of his decline.

Dr. Taufiq Ahmad lives a quiet life in the UK.  But slowly he felt that normal activities were wearing him out. 

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In Episode 23 of the Sarc Fighter podcast, Dr. Ahmad tells the story of how he went from active cyclist, recreational soccer player and general outdoors enthusiast, to a man who spends a lot of time on couch.  Even though he is a physician -- Sarcoidosis was not one of the causes on his radar.

Ultimately, however it was determined that #sarcoidosis had badly damaged his heart.

Looking for previous episodes? https://www.stopsarcoidosis.org/sarc-fighter-podcast/

The Sarc Fighter Podcast is presented in part by a grant from aTyr Pharma.

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!

If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier

You can listen on You Tube as well.  https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email me  carlinagency@gmail.com

Sarc Fighter Facebook Page  https://www.facebook.com/SarcFighter/

Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

November 16, 2020

Episode 22 Meet Mary McGowan the new CEO of the Foundation for Sarcoidosis Research

In this episode of the Sarc Fighter Podcast, Mary McGowan stops by to share more about herself, her extensive background in leadership for healthcare organizations, and her vision for the Foundation for Sarcoidosis Research.

 

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More about Mary and the rest of the staff at FSR https://www.stopsarcoidosis.org/about/staff/

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!

If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier

You can listen on You Tube as well.  https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

FSR Summits 2020  https://www.stopsarcoidosis.org/patient-summits/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email me  carlinagency@gmail.com

Sarc Fighter Facebook Page  https://www.facebook.com/SarcFighter/

Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

 

 

November 9, 2020

Episode 21 Why Sarc is more prevalent in women with Ozioma Chioma PhD

Ozioma Chioma is a postdoctoral fellow at Vanderbilt University.  A microbiologist, she is putting her skills to work thanks to a grant from the Foundation for Sarcoidosis Research.  Ozi - as she is often called, is looking specifically for a link between hormones in women and sarcoidosis.  Her preliminary findings indicate there is such a link.  This could lead to a cure or at least a better treatment down the road. 

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Dr. Chioma will talk about her research, how far they have come and what's next. 

More on Dr. Chioma https://medicine.vumc.org/person/ozioma-chioma-phd

https://www.linkedin.com/in/oziomachioma/

Also in this podcast, I give you the rundown for the November FSR Summit that will be held virtually this year on November 14.  I will be moderating a patient panel discussion that day!  Hope to see you there.  Whether it's self care, dealing with COVID fears, or trying to eat better -- or meeting other Sarc Fighters  there are many reasons to attend.

Check out the summit agenda here: https://www.eventbrite.com/e/november-virtual-sarcoidosis-patient-education-summit-tickets-109038432888

More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!

If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier

You can listen on You Tube as well.  https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

FSR Summits 2020  https://www.stopsarcoidosis.org/patient-summits/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email me  carlinagency@gmail.com

Sarc Fighter Facebook Page  https://www.facebook.com/SarcFighter/

Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

 

October 26, 2020

Episode 20 Mark Landiak was hiking the Grand Canyon, when …

Cardiac Sarc Fighter Mark Landiak has had a tough run of it.  One day he is feeling great, getting some fresh air with his daughter on a hike most people would never undertake.  The next, he isn't sure what's wrong -- but it's not good.  In Episode 20 of the Sarc Fighter Podcast, Mark talks about his struggles to get through that day and how it cot worse after that.  But not to be held down, Mark has written a book on how he fought sarcoidosis and how you can too.  He's also a mega-fundraiser for the Foundation for Sarcoidosis Research.

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Mark's Website: https://gettingbetterwithmark.com/

A quick look at Mark's story: https://gettingbetterwithmark.com/story/

Mark's Blog: https://gettingbetterwithmark.com/coping-with-sarcoidosis/

 

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More on aTyr Pharma: https://www.atyrpharma.com/

Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!

If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier

You can listen on You Tube as well.  https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

FSR Summits 2020  https://www.stopsarcoidosis.org/patient-summits/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email me  carlinagency@gmail.com

Sarc Fighter Facebook Page  https://www.facebook.com/SarcFighter/

Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

 

October 12, 2020

Episode 19 Desiree was a cover girl for health … until.

Desiree West-McCarty was young, beautiful and healthy.  So much so that she was on the cover of a magazine with the caption "A picture of Health."  Then she started getting headaches.  "I was on the beach in Hawaii, and it hurt so bad I cried,"  Desiree said.   Over time she would come to learn that she had neurosarcoidosis in her brain.  In Episode 19 of the Sarc Fighter podcast, Desiree details her story, of how things went from headaches to the hospital and more.

 

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After we recorded the podcast Desiree emailed the following about prednisone...

Shortly after our conversation, I remembered a fact that I had forgotten: I said that at the time of my stroke, I was just taking CellCept, but I forgot that I was also tapering off prednisone at the time. I think I was down to 20 mg/ day. A theory is that the prednisone taper was too fast and that could be what triggered the stroke. After the stroke, they upped my prednisone dosage to 80 mg/day again and did a slow taper over the course of about 9 months. I loathed prednisone, but it helped me in so many ways, too. I definitely have a love-hate relationship with it. 

 

Meet Mary McGowan -- the new CEO for the Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/fsr-announces-new-ceo/

Sample agenda for November Summit https://www.eventbrite.com/e/november-virtual-sarcoidosis-patient-education-summit-tickets-109038432888

Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!

If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier

You can listen on You Tube as well.  https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o

 

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

FSR Summits 2020  https://www.stopsarcoidosis.org/patient-summits/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email me  carlinagency@gmail.com

Sarc Fighter Facebook Page  https://www.facebook.com/SarcFighter/

Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

 

 

 

September 28, 2020

Episode 18 Want to Feel Better? Mindy Buchanan talks today about the November FSR Summit and how it will help.

Mindy Buchanan is the Patient Engagement Manager for the Foundation for Sarcoidosis Research.  In this episode, she talks about the success of the September virtual summit and how you can participate in the upcoming sarc summit in November. 

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As you may know, in a typical year, Sarcoidosis Warriors (Sarc Fighters!) have the chance to travel to cities across the United States to attend meetings, listen to speakers and meet one another -- All in an effort to become more familiar with the Sarc struggle.  This year, thanks to COVID-19, the summits have become virtual.  FSR has worked so hard, to make it so that we can all continue our respective battles with the most support possible!

More info on the November Summit and how to sign up:  https://www.stopsarcoidosis.org/patient-summits/

Meet Mindy!  https://www.stopsarcoidosis.org/about/staff/

Sarc and Pregnancy, a new study.  https://sarcoidosisnews.com/2020/09/10/sarcoidosis-linked-higher-risk-some-pregnancy-complications-swedish-study-shows/

Sarc Merch from FSR https://www.stopsarcoidosis.org/fsr-sarc-store/

 

Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!

If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier

You can listen on You Tube as well.  https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

FSR Summits 2020  https://www.stopsarcoidosis.org/patient-summits/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email me  carlinagency@gmail.com

Sarc Fighter Facebook Page  https://www.facebook.com/SarcFighter/

Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/

 

 

 

September 14, 2020

Episode 17 aTyr Pharma CEO Sanjay Shukla talks about how a new drug could be the answer for many sarc fighters!

aTyr Pharma is working on a drug that could be the answer for many Sarc Fighters -- especially that large percentage fighting pulmonary sarc - or sarcoidosis of the lungs.  aTyr CEO Sanjay Shukla joins me for this podcast to talk about how the drug interacts with a patient's body to prevent sarc from damaging the tissues and causing the damage we are so familiar with.  

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The drug, called aTyr1923 is in the second stage of clinical trials.  It has shown great promise in mice, but the results in humans are still undetermined.  Why is aTyr willing to take on such an expensive and risky undertaking?  How do you try to cure a disease that has no known cause?  And why focus all your efforts on a relatively small number of potential patients?  I asked Sanjay all those questions, and he had some enlightening answers!

More about aTyr https://www.atyrpharma.com/about-life/overview/

Clinical Trials with Atyr1923 https://www.atyrpharma.com/patients/clinical-trials/

Sanjay Shukla Bio https://www.atyrpharma.com/sanjay-s-shukla-m-d-m-s/

 

Do you like the official song for the Sarc Fighter podcast?  It's also an FSR fundraiser!

If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account.  (Kick In to Stop Sarcoidosis)  100-percent of the money goes to the Foundation.  https://stopsarcoidosis.rallybound.org/MarkSteier

You can listen on You Tube as well.  https://www.youtube.com/watch?v=MCbA3EDJ6Ak&list=OLAK5uy_ktdC7Pn7_ezhy4ZJzV_u7o76bqIv6cC6o

 

The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/

FSR Summits 2020  https://www.stopsarcoidosis.org/patient-summits/

Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR  https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E

My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/

email me  carlinagency@gmail.com

Sarc Fighter Facebook Page  https://www.facebook.com/SarcFighter/

Sarc Fighter on Instagram https://www.instagram.com/thesarcfighter/

Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/