When Jone See, a devoted mother of five and doting grandmother to nine, was diagnosed with ALS in December 2014, her loving family and large group of friends channeled their energy into raising money for a cure through the ALS Bike Trek MN. Jone, who passed away on May 3, won’t be there to cheer the team on in person this year, but her spirit, optimism and hope for a cure lives on.
A typical day is anything but for Catherine Scott. She fills her time creating weekly dinner menus and recipes, making to-do lists for her kids, doing advocacy work, and working on a book and a new blog. And she does it all with only the movement of her eyes, thanks to an assistive device called a Tobii Dynavox I-15. Catherine acknowledges, “You would think, as a mostly immobile and bedbound person, my life would be uneventful, but you would be wrong.” It’s all part of Catherine’s plan to make the most of every day. “I am living with ALS, not dying from ALS,” she says.
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.
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.
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.
Thirteen-year-old Garin, who lives with DMD, has a positive attitude that helps his family give him the best life possible. That includes one day becoming an architect who designs buildings for people who use wheelchairs. But first: MDA Summer Camp!
The Labbadia family never wanted to need an MDA Care Center, but when son Brendan was diagnosed with Duchenne muscular dystrophy, they found that their team at Nemours Children’s Hospital in Orlando, Fla., including pediatric neurologist Dr. Richard Finkel, was the one bright spot of an otherwise devastating journey.
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 Maya, who graces the 2017 green MDA Shamrock.
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.
The U.S. Food and Drug Administration (FDA) has approved Biogen’s nusinersen (brand name Spinraza) for the treatment of spinal muscular atrophy (SMA).
