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.
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.
MDA Shamrockstar Jordy shares the importance of MDA Shamrocks, what he wants to be when he grows up and why he loves attending MDA Summer Camp.
Meet Shamrockstar Henry, whose positive attitude stems from his family’s optimism about potential treatments and cures for Duchenne muscular dystrophy.
MDA families represent more than 40 different rare diseases—as all of the disorders under MDA’s umbrella are classified as “rare.”
Over the past 35 years, the MDA Shamrocks program has raised more than $300 million to help save and improve the lives of families living with muscular dystrophy. Get to know Natalie, who graces the 2017 green MDA Shamrock with her sister Avery.
Alejandro, who is the local Atlanta-area ambassador for MDA, is one of ten “Shamrockstars” who will be featured on MDA Shamrocks this year at retailers across the country. His gold shamrock will be available exclusively at Lowe’s Home Improvement stores.
Looking back, neither one of us went to camp expecting to meet the person we’d one day marry. … I can’t imagine my life without Zach. We can’t imagine our lives without our camp family or MDA Summer Camp.
Written by and for the CMT community, the new book collects the experiences and advice of those living with CMT on subjects ranging from bracing and stretching to employment and transportation.
