Rephonic
Artwork for MyFSHD
FSHD
Clinical Trials
Dux4
CRISPR
Gene Therapy
Myfshd
Apabetalone
Facioscapulohumeral Muscular Dystrophy
Fulcrum Therapeutics
Fascioscapulohumeral Muscular Dystrophy
P38 Signaling Pathway
Losmapimod
Pancreatic Cancer
Diagnostic Tests
NIH
Diet
Jaegerthekidd
Avidity
Cherie Temple's Funding
Friends Of FSHD Research

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 disc... more

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Latest Episodes

"There's another old saying, Senator: Don't piss down my back and tell me it's raining." We know a lot of you don't have the time or interest in all the details so we packaged up the highlights of the gene therapy series, with some new information an... more

"But did you bleed him? - Aesculapius says that bleeding is not a cure. It is only a way of proving that you are a physician at the expense of your patient." Finally, we discuss the EPI-321 epigenetic editing phase I/II clinical trial design and its ... more

"Good morning, and in case I don't see ya, good afternoon, good evening, and good night!" We take our time to evaluate publicly available preclinical data for EPI-321 used to support the Epicrispr Biotechnology first-in-human gene therapy clinical tr... more

"In the history of science, innovative concepts occasionally arise from sudden left-field inspiration." Here we make sure everyone is up to speed on the types of CRISPR inhibition for FSHD and FSHD epigenetics s that we are all ready to evaluate the ... more

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Recent Guests

Tamara Gottlieb
A dedicated mom and advocate for FSHD, actively researching nutrition and supplements to aid her family’s health.
Episode: Options for nutrition, supplements, and exercise for FSHDers with Tamara Gottlieb (Part 1)
Carme Farré
Facial fitness expert and creator of FaceToned, who has a family history with FSHD.
FaceToned
Episode: FaceToned® Exercises for the Face with Carme Farré

Host

Peter Jones
Host of the podcast and an FSHD researcher, leading discussions on various topics related to FSHD, including treatment options, clinical trials, and personal stories from the community.

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Talking Points

Recent interactions between the hosts and their guests.

Part 2 of our discussion with our teen FSHD advocates
Q: How should a parent talk about FSHD with their child?
The teens agree it's important for parents to be straightforward about the diagnosis and what to expect to foster better understanding and connections.
Part 2 of our discussion with our teen FSHD advocates
Q: What are your career plans once you get treatment?
Many of the teens express a desire for independence, wanting to live on their own and be able to do normal activities like driving, rather than having ambitious professional goals.
Brad, our angry Dad is back with your questions (Pt 1)
Q: What are the options when it comes to having children for someone diagnosed with FSHD?
It's possible to do in-vitro fertilization and screen embryos to have a higher chance of not passing on FSHD. There's also the option to check in utero for the condition.

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Frequently Asked Questions About MyFSHD

What is MyFSHD about and what kind of topics does it cover?

Focused on the facioscapulohumeral muscular dystrophy (FSHD) community, this podcast prioritizes education and personal empowerment through engaging discussions led by an experienced FSHD researcher. Key topics include insights into the science behind FSHD, emerging therapeutic approaches, and personal anecdotes that resonate with listeners facing similar challenges. The episodes provide valuable information about ongoing clinical trials, lifestyle and wellness strategies, and the importance of community involvement, making it a rich resource for those impacted by FSHD, advocates, and healthcare professionals alike.

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Which podcasts are similar to MyFSHD?

These podcasts share a similar audience with MyFSHD:

1. Historical Blindness
2. Verdict with Ted Cruz
3. The Charlie Kirk Show
4. In Moscow's Shadows
5. Dateline NBC

How many episodes of MyFSHD are there?

MyFSHD launched 4 years ago and published 106 episodes to date. You can find more information about this podcast including rankings, audience demographics and engagement in our podcast database.

How do I contact MyFSHD?

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Where can I see ratings and reviews for MyFSHD?

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What guests have appeared on MyFSHD?

Recent guests on MyFSHD include:

1. Tamara Gottlieb
2. Carme Farré

To view more recent guests and their details, simply upgrade your Rephonic account. You'll also get access to a typical guest profile to help you decide if the show is worth pitching.

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