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 »
Voice of the Patient – The Biopharma perspective
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 »
FSHD drug development pipeline
Growing numbers of companies and academic laboratories are pressing forward with early-stage drug development efforts. This chart shows how far various candidate anti-DUX4 drugs have progressed along the path to FDA approval. DUX4 is considered a key gene causing FSHD. The process begins with finding a “target,” or biological disease mechanism, that can be modified… Read More »
Compression belts help me look buff again
by Rick Whitehead, Knoxville, Tennessee I’d like to share one of the most valuable tips I’ve had for dealing with “FSHD belly.” My abdominal core muscles had become like weak balloons, displacing internal organs. It’s not comfortable, not attractive and sometimes painful. I was in a clinical trial in Rochester, New York, and had a… Read More »