You’ve Got to Give Back: Former Camper Fundraises for New Generation at MDA Muscle Walk

In MDA, Destiny found the support and community she needed to live fully as a 12-year-old, as a college student and now as a mom to two kids. That’s why she’s been a passionate Muscle Walk fundraiser for the past 15 years, whether she was well enough to walk in the event or not. That’s why she’ll continue participating.

Read More

I’m an Adult. Talk to Me Like One.

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.

Read More

MDA Cohosts and Sends Representatives to SMA Patient Focused Drug Development Meeting with FDA


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.

Read More