Former MDA National Ambassador Abbey Umali shares big plans post grad
Recent high school graduate Abbey Umali, a former MDA National Ambassador who lives with CMT, shares her plans for the future.
Category: Young Adults
Pete Frates, the ALS Ice Bucket Challenge and a Special Connection
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.
Siblings Run 10K Together with Help from Team Momentum
Siblings Hugo and Maria Trevino participated in the Chicago Spring Half Marathon and 10K with MDA Team Momentum.
Spinraza Helps Young Woman Participate in Muscle Walk — and She Thinks You Should, Too
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 Rumble of Motorcycles Means Hope for One Pennsylvania Family
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.
From Summer Camp to Chicago Marathon, Robb Valentyn Goes All in for MDA
From MDA Summer Camp to MDA Team Momentum, Robb Valentyn has been volunteering with MDA for ten plus years and doesn’t plan to stop anytime soon.
High-School Track Athlete with Myotonic Dystrophy Finds His Stride Helping Others
Almost exactly one year ago, in the spring of 2016, Kade McCann learned he had myotonic dystrophy. For this young athlete, the diagnosis stopped him in his tracks.
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.
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.
Former MDA Camper and State Ambassador Named Ms. Wheelchair Wisconsin
Myranda Gereau met Ms. Wheelchair Wisconsin as a girl at MDA Summer Camp at age 8. Now, years later, she proudly wears the crown she dreamed of as a child.
