GrantRSS2 days ago
The Muscular Dystrophy Association is holding its 26th annual fundraising gala in New York City on June 4 to raise money for ALS research. The event brings together financial leaders and medical researchers to support the search for treatments and cures for ALS, a disease that affects nerve cells controlling muscles.
WHY IT MATTERSFunding from this gala directly supports ALS research that could lead to new treatments, making it important for patients to know where research dollars are being invested and what progress is being made.
NewsRSS4 days ago
A person with facioscapulohumeral muscular dystrophy (FSHD) is finding it harder to move around their home with a walker and is exploring other mobility options. They recently visited different places to look for solutions that might work better for their situation. This article discusses the process of finding new mobility devices when current ones stop working well enough.
WHY IT MATTERSPeople with FSHD often face progressive mobility challenges, and knowing what alternative devices exist can help maintain independence and quality of life as the disease progresses.
AdvocacyRSS4 days ago
Three organizations that work with facioscapulohumeral muscular dystrophy (FSHD) patients are joining together to make clinical trials better. FSHD is a rare muscle disease that causes weakness in the face, shoulders, and upper arms. This partnership wants to improve how these trials are designed so they can test new treatments more effectively.
WHY IT MATTERSBetter-designed clinical trials mean faster progress toward treatments for FSHD, and patient input through the FSHD Society ensures trials are structured in ways that actually work for people living with the disease.