by June Kinoshita, FSHD Society On June 29, 2020, the FSHD Society convened its landmark Voice of the Patient Forum. Patients and family members testified by livestream and email to educate the FDA on how FSHD has impacted their lives. More than 600 people responded to our surveys and provided statements which have been compiled… Read More »
We Heard Your Voice
Legacy planning made simpler
If you have ever wished that you could do more to help in the fight against FSHD, we invite you to consider joining the FSHD Society Legacy Circle by including the Society in your will or estate plan. To learn more about the numerous ways you can leaving a lasting legacy, please click here. To… Read More »
Embrace your experience
by Lori Brant There were two ways to walk with my walker down the hallway to my condo. The first way kind of went like this: “Man, I am tired. It has been such a long day.” I hate having to concentrate on each and every step. I can’t stand making sure I’m taking my… Read More »
Voice of the Patient – The Biopharma perspective
by Molly White, Dyne Therapeutics Molly White, Dyne Therapeutics It has been a banner year for the biopharma industry, with record investment, groundbreaking COVID vaccine efforts and incredible scientific advances. It is a particularly hopeful time, both for the industry and for the people living with diseases that our companies are addressing. At the end… Read More »
Making the Most of the Holidays
A Gift You Give to Yourself! by Leigh Reynolds, FSHD Society Celebrating the holidays can be emotionally draining for many, but for those with a chronic condition like FSH muscular dystrophy it can be even more so. Add in a year like we’ve had – global pandemic, natural disasters, politics – and it is downright… Read More »
DIY holiday cards
Many of you have asked if the FSHD Society could provide holiday cards you can send to family and friends, asking for donations. We heard you and have come up with this collection of e-cards by artists with FSH muscular dystrophy. Here’s how to use them: Click on the card you want to use. Control… Read More »