Emma Weatherley, Managing Director of FSHD Global chats with Tim from Down Under! Emma has been living with FSHD for years, and she spoke with Tim about Australia’s efforts with FSHD Global and Project Mercury. Stay tuned for more #WorldFSHDDay episodes!

Up next in our special #WorldFSHDDay interviews is Dr. Corrie Erasmus. Dr. Erasmus is a pediatric neurologist at Radboud University Medical Center in the Netherlands. Listen to hear about her research and the crucial importance of studying Pediatric FSHD.

Up next for #WorldFSHDDay, Jack Gerblick, FSHD Society board member chats with Tim. A dedicated volunteer who is impacted by FSHD, Jack is also the Community Development & Engagement Committee Chair and the leader of the Atlanta Chapter. Listen to hear about the Atlanta Chapter watch party tonight as the King and Queen buildings are lit orange for FSHD awareness!

It’s World FSHD Day! In our first special mini-episode of the day, Neil Camarta talks with Tim about the growth of the FSHD Canada Foundation and the future of Project Mercury. Stay tuned for more special episodes!

We’re thrilled to have Lauren “Lolo” Spencer as our Community Profiles guest this month! Lauren plays Jocelyn on the popular HBO series The Sex Lives of College Girls and is the founder and CEO of Live Solo, a lifestyle brand dedicated to young adults with disabilities who seek independence and self-empowerment. Lauren is a phenomenal actress, model, author, and disability advocate, and her new book "Access Your Drive and Enjoy the Ride: A Guide to Achieving Your Dreams from a Person with a Disability" is out now at all major bookstores!

Catch our Community Profiles episodes on the 2nd Tuesday of each month. Listen on your favorite podcast player or watch on YouTube or Facebook! Don’t forget to subscribe to make sure you never miss an episode!

Did you know that June 20th is World FSHD Day? Check out this Hot off the Press episode to learn how to participate and what we have planned for this year! Tim will get you caught up on things like the Orange Slice Selfies campaign, special programming for the FSHD Radio Show, the International Research Congress in Milan, Project Mercury, and more. We have a lot in store for the month of June! 

Find more details and the World FSHD Day toolkit here: https://www.fshdsociety.org/world-fshd-day/

Catch our Hot off the Press episodes on the 4th Thursday of each month. Listen on your favorite podcast player or watch on YouTube or Facebook. Subscribe to make sure you never miss an episode!

Family planning and adoption can be difficult subjects for anyone to navigate, especially in the face of FSHD. In this episode, Deb Calhoun and Jim & Mary Albert discuss the topic of adoption and FSHD, as well as the hurdles involved in parenting while differently abled. We hope you enjoy this insightful conversation about a subject that often doesn’t get the attention it deserves!

Catch our Community Profiles episodes on the 2nd Tuesday of each month. Listen on your favorite podcast player or watch on YouTube or Facebook! Don’t forget to subscribe to make sure you never miss an episode! 

April’s Hot off the Press guest is Amanda Hill, Director of Research and Patient Engagement at the FSHD Society. We are entering a new era of clinical trials in FSHD research. This is an exciting time, and Amanda sat down with Tim to explain everything you need to know when considering getting involved in clinical trials. 

We’d like to hear from you about your clinical trial experiences! Here is a link to the survey that Amanda mentions: bit.ly/41YqHZl

Catch our Hot off the Press episodes on the 4th Thursday of each month. Listen on your favorite podcast player or watch on YouTube or Facebook. Subscribe to make sure you never miss an episode!

This month’s community profiles guest is Apex Frazier. Apex is a hip-hop artist living in Southern Ontario who has battled FSHD for the past five years. In this episode, Apex talks with Tim about dealing with the aggressive onset of FSHD while still in high school and how his experiences have shaped his identity as an individual and as a musician. 

Catch our Community Profiles episodes on the 2nd Tuesday of each month. Listen on your favorite podcast player or watch on YouTube or Facebook! Don’t forget to subscribe to make sure you never miss an episode! You can also subscribe to Apex’s YouTube channel and hear more of his music on Spotify. Find “Thick N Thin,” the single featured in this episode, here: https://www.youtube.com/watch?v=dB0EHaaVD4I

Have questions about Avidity’s upcoming FORTITUDE trial? This month, our Hot off the Press guest is Amy Halseth, PhD, of Avidity Biosciences. Amy is the Executive Director of Clinical Development and serves as the Program Lead for the company’s FSHD program. Avidity Biosciences has announced its plans to launch FORTITUDE, a Phase 1 / 2 clinical trial. Amy sat down Leigh Reynolds of the FSHD Society to answer your questions from last month’s webinar. You can watch the webinar here if you missed it: bit.ly/3nc9LPV

Catch our Hot off the Press episodes on the 4th Thursday of each month. Listen on your favorite podcast player or watch on YouTube. Subscribe to make sure you never miss an episode!