MDA advocacy program awards $140K to 7 rare disease groups

With projects spanning gene therapy research, patient advocacy, and air travel safety, seven U.S. organizations will receive $140,000 in overall funding from the Muscular Dystrophy Associations (MDA) Advocacy Collaboration Grant Program. The program, which opened in 2022, seeks to support and enhance key public policy and advocacy initiatives…

MDA Campaigns Support Summer Camp, NMD Community

To help support its popular summer camp and the neuromuscular disease community, the Muscular Dystrophy Association (MDA) has launched campaigns through October that involve more than 1,000 retailers nationwide. Proceeds from the MDA’s summer retail campaigns will benefit research, care, and advocacy for those living with muscular…

Register Now for Global Genes’ RARE Patient Advocacy Summit

Registration is now open for Global Genes‘ 2021 RARE Patient Advocacy Summit. This year’s hybrid event will be livestreamed from California Sept. 27-29, and some seats also are available for attending the event in person in San Diego. “Here you’ll have the opportunity to connect and engage with others…

Rare Myopathy Affects Women, Too, Advocate Emphasizes

After being diagnosed as a carrier of x-linked myotubular myopathy (XLMTM) and losing her infant twin boys to the disease, Ashley Walker was driven into an episode of alcoholism. What she didn’t know then was that her liver was affected severely by the disease, which eventually resulted in an…

Advocacy, MD, and Dealing with the US Healthcare System

I have limb-girdle muscular dystrophy type 2L (LGMD2L). My previous column, “I Live Creatively to Power Past Obstacles,” discussed how I live with my limitations. For me, the biggest challenge is navigating the world outside my home. But dealing with our disjointed healthcare system is also an issue.