Castuner

MyFSHD

Peter L Jones, PhD

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.

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Episodes

117 episodes

  1. Continuing our discussion with Ambassadors of the Cure FSHD for All initiative 1:07:23
  2. FSHD Biopharma --Please include us in your clinical trials (or at least allow expanded access!) 1:10:41
  3. Understanding the Satellos drug going to clinic for FSHD 1:03:02
  4. FSHD Phase I/II clinical trial previews for Scholar Rock, Soufflé and Dyne. 1:21:00
  5. Cleaning the lipstick off a pig 2:21:29
  6. World FSHD Day 2026 1:49:03
  7. Evaluating gene expression data in FSHD and presenting at ASGCT 1:56:51
  8. Reddit Q&A (part 2). No "A", a little "I". Peter and Brad finish up the line of Reddit questions. 2:03:36
  9. Some clinical trial news of the day (March 27, 2026 - **updated March 29th**) 1:09:22
  10. Reddit Q&A 3/17/2026 pt 1 (no song); Peter sits down with Brad our Angry Dad 1:54:46
  11. Our takes on recent (~Jan 2026) FSHD clinical trial updates 46:01
  12. All-in-one version of our evaluation of EPI-321 data and trial 1:35:42
  13. Our evaluation and opinions of the EPI-321 clinical trial design and potential based on the pre-clinical data 45:52
  14. Our scientific evaluation of and opinions on the EPI-321 publicly available preclinical data 2:04:01
  15. Prequel for the Epicrispr Bio data and clinical trial discussion 1:23:23
  16. The nuts and bolts of gene therapy for FSHD (Part 2 of 2) 1:33:55
  17. The nuts and bolts of gene therapy for FSHD (Part 1 of 2) 1:19:44
  18. Part 2 of our discussion with our teen FSHD advocates 41:39
  19. Teens promoting their "Cure FSHD for All" initiative, podcast part 1 1:19:15
  20. MyFSHD is worldwide on FSHD Day 1:19:22
  21. Our take on Avidity's FORTITUDE phase 1/2 trial data 54:59
  22. Options for nutrition, supplements, and exercise for FSHDers with Tamara Gottlieb (Part 2) 1:05:00
  23. Options for nutrition, supplements, and exercise for FSHDers with Tamara Gottlieb (Part 1) 50:35
  24. FaceToned® Exercises for the Face with Carme Farré 1:06:28
  25. Brad, our angry Dad with your questions (pt 2) 1:04:33
  26. Brad, our angry Dad is back with your questions (Pt 1) 1:09:13
  27. The science and the foundational funding leading to the current technologies in FSHD clinical trials. 1:49:10
  28. Friends and funding. 1:34:06
  29. For FSHD gene therapy you need to "Have-a-Little-Heart" 32:02
  30. Fulcrum follow-up with our Angry Dad 1:37:03
  31. Our take on the REACH losmapimod clinical trial results 1:58:20
  32. A FORTITIDE follow-up with our (not so) Angry Dad. 1:15:45
  33. A(+) is still for Avidity: give me the good stuff! 1:05:39
  34. Pigs and p38 1:33:51
  35. The three little (FSHD) piggies. 2:10:57
  36. CRISPR in the clinic 58:41
  37. Allow me to reintroduce Jaegerthekidd 55:39
  38. Assessing the case, so far, for apabetalone as a new drug candidate being investigated for FSHD. 1:24:03
  39. Catching up on clinical trials 1:29:41
  40. Live from Australia 1:14:10
  41. A gene therapy approval for Duchenne muscular dystrophy and understanding Therapeutic Misconception. 1:57:02
  42. More questions, more answers, and some explaining to do. 1:37:19
  43. Your questions, our answers. 1:27:04
  44. Live from the Biologic Scaffolds for Regenerative Medicine Symposium in Napa California 1:41:56
  45. We are back with updates on our worldwide efforts for FSHD diagnostics. 1:05:13
  46. Roundup of the FSHD news of the day with our CRISPR Goddess. 1:32:28
  47. The return of Brad (the angry dad). 1:51:18
  48. Rare Disease Day and Accountability 1:40:40
  49. Reintroducing the MyFSHD podcast 1:29:50
  50. "A" is for Avidity 1:13:58