1. EachPod

MyFSHD - Podcast

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.

Non-Profit Business
Update frequency
every 6 days
Average duration
79 minutes
Episodes
105
Years Active
2022 - 2025
Share to:
A(+) is still for Avidity: give me the good stuff!

A(+) is still for Avidity: give me the good stuff!

"Whatchyou talkin' 'bout Willis?" In a field where every press release is met with unsubstantiated hoopla and proclamations of BREAKTHROUGH! to fire you up to shake you down, we finally have some rea…

01:05:39  |   Fri 14 Jun 2024
Pigs and p38

Pigs and p38

"You're messing with the wrong guy!!!!" We expand a bit more on the utility of the FSHD-like pig model and then discuss the science behind and implications of p38 inhibition for FSHD.

01:33:51  |   Sat 01 Jun 2024
The three little (FSHD) piggies.

The three little (FSHD) piggies.

"We don't get a lot of things to really care about." So, you think you are interested in science, eh? Well, let's see how the sausage is made. Today we share our experience generating the FSHD-like m…

02:10:57  |   Sun 28 Jan 2024
CRISPR in the clinic

CRISPR in the clinic

"Come out to the coast, we'll get together, have a few laughs..." The holiday season we discuss the recent FDA approved CRISPR therapy for sickle cell disease and some dynamics of methylation.

00:58:41  |   Sun 24 Dec 2023
Allow me to reintroduce Jaegerthekidd

Allow me to reintroduce Jaegerthekidd

"As I leave my competition respirator style, climb the ladder to success escalator style." Today we have the Jaegercast, but first we continue our discussion about apabetalone, a new candidate drug f…

00:55:39  |   Sat 04 Nov 2023
Assessing the case, so far, for apabetalone as a new drug candidate being investigated for FSHD.

Assessing the case, so far, for apabetalone as a new drug candidate being investigated for FSHD.

"I don't know how I'm going to live with myself if I don't stay true to what I believe." We evaluate the recent published work describing apabetalone, a small molecule drug from Resverlogix Corp that…

01:24:03  |   Wed 01 Nov 2023
Catching up on clinical trials

Catching up on clinical trials

"I am sick and tired of the entire western world knowing how my kidneys are functioning!" We discuss current and upcoming FSHD clinical trials and touch a little bit on funding.

01:29:41  |   Sun 24 Sep 2023
Live from Australia

Live 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 wi…

01:14:10  |   Wed 13 Sep 2023
A gene therapy approval for Duchenne muscular dystrophy and understanding Therapeutic Misconception.

A 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 FS…

01:57:02  |   Fri 28 Jul 2023
More questions, more answers, and some explaining to do.

More 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, h…

01:37:19  |   Tue 20 Jun 2023
Your questions, our answers.

Your 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.

01:27:04  |   Sat 10 Jun 2023
Live from the Biologic Scaffolds for Regenerative Medicine Symposium in Napa California

Live 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…

01:41:56  |   Sat 27 May 2023
We are back with updates on our worldwide efforts for FSHD diagnostics.

We 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.

01:05:13  |   Wed 17 May 2023
Roundup of the FSHD news of the day with our CRISPR Goddess.

Roundup 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 Cha…

01:32:28  |   Wed 12 Apr 2023
The return of Brad (the angry dad).

The 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 so…

01:51:18  |   Sun 26 Mar 2023
Rare Disease Day and Accountability

Rare 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 …

01:40:40  |   Fri 10 Mar 2023
Reintroducing the MyFSHD podcast

Reintroducing 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 t…

01:29:50  |   Sat 25 Feb 2023

"A" is for Avidity

"Why, sometimes I've believed as many as six impossible things before breakfast."  Experimental therapies designed specifically for FSHD are finally arriving for trial in the clinic (i.e., in people)…

01:13:58  |   Mon 13 Feb 2023
We have a lot in common with pigs.

We have a lot in common with pigs. "Don't flatter yourselves", reply the pigs :).

"Do you ever have déjà vu, Mrs. Lancaster?"  "I don't think so, but I could check with the kitchen"  We will discuss some cool new pig data and how we are going about making sure our FSHD-like minipi…

01:27:34  |   Mon 06 Feb 2023
Our

Our "State of the Field" address.

"I've been going to this high school for 7-1/2 years.  I'm no dummy."  As 2023 gets underway, let's check in and see where the field stands - in our opinion, of course.

01:47:15  |   Fri 27 Jan 2023
Disclaimer: The podcast and artwork embedded on this page are the property of Peter L Jones, PhD. This content is not affiliated with or endorsed by eachpod.com.