This Q&A is based on the December 9 webinar with Rabi Tawil, MD, and Ghinwa Dumyati, MD, from the University of Rochester Medical Center, and the January 15 webinar hosted by the National Organization of Rare Diseases with Stephen Hahn, MD, FDA commissioner; Peter Marks, MD PhD, director of the FDA’s Center on Biologics Evaluation… Read More »
COVID-19 Vaccine Q&A
MRI in FSH muscular dystrophy research
This month’s FSHD University webinar (video above) provided an outstanding, nontechnical explanation of magnetic resonance technology (MRI) and how it is being applied in the Fulcrum Therapeutics clinical trial of an FSHD therapeutic drug. Rosemary Shull of AMRA Medical expounded on why MRI is the “gold standard” method for imaging soft tissues such as… Read More »
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 »