Peter L Jones, PhD

MyFSHD

Business EN ↓ 114 episodes

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.

Author

Peter L Jones, PhD

Episodes

Questions and comments from "Dad" about the future of FSHD 13.04.2022 1:32:34

Peter Jones sits down with a true stakeholder in all of this and talks curing FSHD. Brad Hasenjaeger is a concerned father and husband who wants action.

What's going on in FSHD week ending April 9th, 2022 09.04.2022 28:20

Dr. Peter Jones gives a brief recap of the week and answers some questions from patients.

Chip Wilson discusses his new venture, Solve FSHD, and his vision for restoring muscle health in FSHD and aging. 06.04.2022 1:15:08

Chip Wilson, founder of Lululemon and an FSHD patient, sits down with Drs. Peter Jones and Charis Himeda to discuss his new $100 million venture, Solve FSHD, aimed at curing FSHD and age-related muscle decline.

What's going on in FSHD, week ending April 2 02.04.2022 32:33

Peter Jones answers recent patient questions and addresses issues relating to FSHD

The making of a FSHD mouse 30.03.2022 1:51:38

Drs. Takako and Peter Jones discuss how they made the FLExDUX4 FSHD-like mouse model that is used around the world for FSHD therapeutic development and preclinical testing.

What's going on in FSHD March 26th 2022 26.03.2022 32:26

Free flowing commentary on all things FSHD

FSHD researcher Dr. Julie Dumonceaux talks FSHD with MyFSHD UK Ambassador Kate Fowles 24.03.2022 41:48

Dr. Julie Dumonceaux, Professor at University College London Great Ormond Street Institute of Child Health in London, England, discusses her lab's FSHD work and overall FSHD efforts in the UK with MyFSHD UK Ambassador Kate Fowles.

FSHD therapeutics overview 17.03.2022 1:43:58

Dr. Charis Himeda joins us again to talk all types of FSHD therapeutic approaches

Epigenetics and FSHD 12.03.2022 27:15

A primer on epigenetic gene and genome regulation and how it relates to FSHD

The DUX4 story with Dr. Alexandra Belayew 10.03.2022 1:29:18

Dr. Alexandra Belayew from the University of Mons in Belgium and the discoverer of DUX4 sits down with volunteer MyFSHD Ambassador Jenny Hasenjaeger to discuss the discovery of DUX4, the Fulcrum Losmapimod trial, antisense, and a little bit of everything FSHD.

FSHD1, FSHD2, & FSHD1+2 basics 06.03.2022 21:04

A short primer on the genetic differences and similarities between FSHD1, FSHD2, and FSHD1+2 just to make sure we are all up to speed.

CRISPR technology for FSHD with Dr. Charis Himeda 02.03.2022 1:31:38

Dr. Peter Jones sits down with Dr. Charis Himeda to discuss her invention of CRISPR-inhibition for FSHD, some of the bumps along the way, and its ultimate therapeutic potential and constraints.  In addition, other CRISPR technology that is being developed for FSHD is discussed.

FSHD diagnostics explained 27.02.2022 1:22:52

Dr Peter Jones explains genetic diagnostics for FSHD1 and FSHD2.  This covers various methods for FSHD deletion testing through the new epigenetic research testing, and the difference between CLIA-approved testing and research testing.  The final 20 minutes takes you through your FSHD genetic report if you participated in the epigenetic research testing at the Jones Lab at UNR.

MyFSHD Rare Disease Day with Dr. Ryan Wuebbles, FSHD patient and neuromuscular disease researcher. 25.02.2022 59:59

Dr. Peter Jones sits down with Dr. Ryan Wuebbles to discuss his journey with FSHD first as a patient and now as a researcher.  Covers some FSHD basics, research approaches, and how you can be the best advocate for FSHD.