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MyFSHD is about education and personal empowerment for the worldwide facioscapulohumeral muscular dystrophy (FSHD) community. Here we have discussions and commentary hosted by FSHD researcher Peter Jo... more
FAQs about MyFSHD:How many episodes does MyFSHD have?The podcast currently has 108 episodes available.
September 13, 2023Live from Australia"Farmer Hoggett knew that little ideas that tickled, and nagged, and refused to go away should never be ignored, for in them lie the seeds of destiny." We are in Australia promoting FSHD awareness with Parliament and to gather government support for FSHD diagnostics and clinical trial infrastructure, as well as catching up with many of our Australian friends....more1h 15minPlay
July 28, 2023A gene therapy approval for Duchenne muscular dystrophy and understanding Therapeutic Misconception."Life has meaning only in the struggle. Triumph or defeat is in the hands of God. So let us celebrate the struggle!" With the FDA approval of the first gene therapy for DMD and clinical trials for FSHD in all stages of planning and performance, we take a moment to discuss the history of the DMD gene therapy path to approval as it relates to FSHD and address the important, yet oft ignored, concept of Therapeutic Misconception....more1h 58minPlay
June 20, 2023More questions, more answers, and some explaining to do."It's human nature to lie. Most of the time we can't even be honest with ourselves." At MyFSHD is is always FSHD Day. We continue the conversation around therapeutic modalities and clinical trials, hopefully providing additional context for clarification, or just digging a deeper hole. You tell us....more1h 38minPlay
June 10, 2023Your questions, our answers."Apes don't read philosophy." "Yes they do, Otto, they just don't understand it!" We're here to answer your questions and help you understand all things (FSHD) on your mind....more1h 28minPlay
May 27, 2023Live from the Biologic Scaffolds for Regenerative Medicine Symposium in Napa California"We can rebuild him. We have the technology. We can make him better than he was. Better, stronger, faster." Today we are at the Biologic Scaffolds for Regenerative Medicine Symposium to discuss novel ways to potentially help FSHDers maintain strength and slow down pathology. Additional technology being presented by be applicable to help regain muscle mass after therapy. Joining us is one of the best FSHD advocates around, Emma Weatherley from FSHD Global Research Foundation in Australia. And we drop the newest track from Jaeger the Kid!...more1h 42minPlay
May 17, 2023We are back with updates on our worldwide efforts for FSHD diagnostics."We Are Unique, Gentlemen, In That We Create Ourselves Through Long Years Of Rigorous Training, Sacrifice, Denial, Pain." Today we focus on our worldwide efforts to help FSHDers everywhere. ...more1h 6minPlay
April 12, 2023Roundup of the FSHD news of the day with our CRISPR Goddess.Roy: "This is everything, ain't it? This is the choice it comes down to - this is our immortality." Romeo: "You don't need to be thinking immortality - you need to be thinking hit the 7 iron!" Dr Charis Himeda joins us to discuss recent news on stem cells, losmapimod, gene therapy, and antisense for FSHD....more1h 33minPlay
March 26, 2023The return of Brad (the angry dad)."You just put your pickle on everybody's plate, college boy, and leave the hard stuff to me." We talk a little more about funding, hopefully providing some clarity, then bring on our Angry Dad for some questions, and then bring it home with another new track from Jaeger....more1h 52minPlay
March 10, 2023Rare Disease Day and Accountability"Sorry, Vern. I guess a more experienced shopper could have gotten more for your seven cents." Rare disease day is the last day of February, which got us thinking about what really needs to be done to get over the line. We also answer listener questions about animal models and the Avidity, myostatin inhibition, and cell therapy trials....more1h 41minPlay
February 25, 2023Reintroducing the MyFSHD podcast"Come on in, grab a beer. Don't cost nothing." We have been podcasting about all things FSHD and realize that we have a lot of new listeners over the past year so we want to take this opportunity to catch everyone up on what the MyFSHD podcast is all about. You may have noticed that we are a bit different. We are not asking for money and we are not selling you anything, just real talk from experts in all things FSHD to help you understand and navigate the space with knowledge. On the science side, we discuss a little more Avidity and Vita cell therapy....more1h 30minPlay
FAQs about MyFSHD:How many episodes does MyFSHD have?The podcast currently has 108 episodes available.