MyFSHD
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 Jones, PhD, on many things of interest to the FSHD community. Learn about the science behind the different FSHD therapeutic approaches, FSHD pathology, family genetics and FSHD diagnostics. We will discuss upcoming clinical trials and what to look forward to. You will get to understand how you can be better prepared, become involved, and help contribute to defeating FSHD once and for all.
- Update frequency
- every 6 days
- Average duration
- 79 minutes
- Episodes
- 105
- Years Active
- 2022 - 2025
Happy 2023 from MyFSHD!
"Life isn't like in the movies. Life..... is much harder." Whatever you end up doing, love it. And we love working every day on the problem of FSHD, educating others about the science, helping peo…
Merry Christmas, Happy Hanukkah, and Happy Holidays from MyFSHD
"Remember no man is a failure who has friends." We catch up with a few friends in this holiday season as FSHD research plows ahead.
Antisense, gene therapy, and stem cell news, and the Blues Brothers
"I want four fried chickens and a Coke". Dr. Charis Himeda joins us as we discuss some encouraging recent data from Sarepta for one of their DMD gene therapy trials and from Avidity for their myoton…
The best humanized FSHD muscle xenograft mouse model with Dr. Bob Bloch.
"Never mind manoeuvres, always go at them". Dr. Bob Bloch from the University of Maryland School of Medicine joins us to discuss his development of the human FSHD muscle xenograft mouse model that is…
We have a lot to be thankful for!
"You're messing with the wrong guy!" Happy Thanksgiving to our friends in the US, and for everyone else, it is always a good time to remember and give thanks for those you care about and who care ab…
More on FSHD research testing, CRISPR, and minipigs
“The most terrifying day of your life is the day the first one is born. Your life as you know it is gone … But they learn how to walk, and they learn how to talk, and you want to be with them. And th…
Catch up on some news of the week then sit down with FSHD researcher Maryam Farooqi
"Seek not to know the answers, but to understand the questions." Get to know Maryam Farooqi of the Jones Lab for FSHD. She is the first half of the team that performs all the FSHD research testing …
News of the week on Fulcrum and CRISPR gene therapy.
"Advertising has us chasing cars and clothes, working jobs we hate so we can buy s--- we don't need." We discuss the publicly available data for the Fulcrum Open Label Extension of the ReDUX4 trial …
Happy Nevada Day! Today we talk about early onset FSHD and getting adolescents into clinical trials.
"I would like, if I may, to take you on a strange journey." Ally Roets and Kristin Zwickau from the Early Onset FSHD Parent Group join us today to discuss what we need to do to get trial ready for t…
Monopoly money in science and to test, or not to test, (your kids) for FSHD
"Roads? Where we're going, we don't need roads." We address listener questions on the cost of research and bringing new therapeutics to market and the debate over testing kids for FSHD when they ar…
Keeping up with even more investment and more technology coming into the FSHD space.
"Was it over when the Germans bombed Pearl Harbor? Hell no!" We're just getting started at tearing this disease down, with more money being invested and more companies getting into the space seeming…
More clinical trial discussion with our FSHD Mom and Dad.
"Just how bad is it?" "It's a fire. All fires are bad." We sit down with our FSHD Mom and fire inspector Dad and talk FSHD clinical trials. Also, it's fire prevention month, check your smoke and …
Update on clinical trials for FSHD
"Oh, you should never, never, doubt what nobody is sure about." Fulcrum has the losmapimod phase III trial going and now both Roche and Avidity just announced their upcoming clinical trials for FSHD…
Catching up on FSHD, Saturday Sept 24th, 2022
“Well, I guess if a person never quit when the going got tough, they wouldn’t have anything to regret for the rest of their life." No regrets here, no matter how tough, we'll never quit till the job…
Live from Sydney, Australia, it's MyFSHD!
"That's not a knife...... that's a knife!" Drs. Peter and Takako Jones attend the 11th Annual Sydney Chocolate Ball to raise funds for FSHD Global Research Foundation, but we still talk about FSHD n…
Brunch with Maryam (and Takako and Peter). Our 50th episode!
"Faced with overwhelming odds I'm going to have to science the s*** out of this." We celebrate our 50th podcast in style with Maryam Farooqi taking over the hosting duties (and the kitchen) as we di…
FSHD catch-up, September 7, 2022
"The secret's in the sauce." We discuss some recent news in the neuromuscular disease space and FSHD publications on cell therapy and biomarkers.
More CRISPR questions from the audience.
"Your scientists were so preoccupied with whether they could, they didn't stop to think if they should." Our CRISPR Goddess Charis talks with host Peter and answers your questions on CRISPR, eventua…
Kari Cilliers, a medical student from South Africa found her way to Nevada to learn about FSHD
"She made me realize just how precious wild places are." Our visiting medical student from South Africa, and fellow FSHDer, Kari Cilliers, joins Dr. Jones to discuss her time in the US working on FS…
Our FSHD Dad is back with more questions, comments and concerns on biomarkers, clinical trials, MRI, and supplements
"If you have one bucket that contains 7 gallons and one bucket that contains 2 gallons, how many buckets do you have?" Our FSHD dad asks questions on research and funding priorities, biomarkers, MRI…