When Chris Anselmo, who lives with Miyoishi myopathy, learned that Pete Frates’, the creator of the ALS Ice Bucket Challenge was facing challenges paying his medical bills, he felt compelled to share his story.
Kate, who lives with SMA type 3 and has directly benefited from, Spinraza, a medication that can trace its root back to MDA, encourages supporters to go the distance for MDA via their local MDA Muscle Walks.
The deafening roar of thousands of motorcycles is music to Julie Harris’s ears. To her, that rumble means one thing: “Hope.” This weekend, the Reading Fairgrounds in Eastern Pennsylvania will be filled with Julie’s favorite sounds. That’s because the 30th Annual MDA Ride for Life is speeding into town.
I’m a 25-year-old college graduate. I’m an adult and I can prove it. I have bills, grown-up responsibilities and the obligation to do things I don’t want to do. Still, regardless of the date of birth listed on my Colorado State ID, some people still treat me like a kid. Unfortunately, a lot of the world finds it easy to infantilize people with disabilities.
Being chosen to speak in front of the FDA and represent the SMA community makes me feel incredibly honored. Today’s SMA Patient-Focused Drug Development (PFDD) meeting with the FDA means we have a voice as patients living with rare muscle diseases. The PFDD meeting was set up so that patients with SMA and the parents of children with SMA could stand before the FDA and voice their concerns, discuss their experiences with research and address the need for continued research that evolves to include more patients. This is my story.