Earlier this Spring, I had the honor of taking part in the 3rd annual Strength, Science and Stories of Inspiration event at the Harvard Science Center in Cambridge, Massachusetts. As a patient with dysferlinopathy (a form of muscular dystrophy), I was heartened to see every seat in the 500-person auditorium filled to support the mission of finding . . .
Cohl Hometown: Exeter, NH Age: 9 Diagnosis: I was diagnosed with Spinal Muscular Atrophy, Type 3, at age 8. Spinal Muscular Atrophy (SMA) is a genetic disease affecting the part of the nervous system that controls voluntary muscle movement. Favorite School Subject/Activities: My favorite subject in school is social studies. Favorite People: My mom, dad, sister, Ava, and cat, Celine . . .
Hailey Hometown: Bismarck, ND Age: 16 Diagnosis: In 2001, I was diagnosed with Spinal Muscular Atrophy (SMA) Type 2. I was just 2 years old. SMA is a genetic disease affecting the part of the nervous system that controls voluntary muscle movement. Favorite School Subject/Activities: When I am in school, I like English & Biology class the . . .
Caregivers, simply put, are the people who make my life happen. And hiring and managing caregivers is essential to being an adult with SMA living life on my terms. But, no matter how many times I have to do it, hiring new personal care attendants (PCAs) is one of my least favorite things. Let me tell . . .
Marley Hometown: Mystic, CT Diagnosis: I have Spinal Muscular Atrophy Type 2, and I was diagnosed when I was 1 year old. SMA is a genetic disease affecting the part of the nervous system that controls voluntary muscle movement. Age: 15 Favorite School Subject/Activities: I am currently a sophomore in high school. My favorite subjects . . .
When Kevan Chandler and his friends decided to go backpacking in Europe this summer, they expected a few dozen friends and family members to be interested in their plans. Little did they know their adventure would become international news. The media response to the trip has been “awesome” according to Kevan. He and his travelling . . .
For the past seven months, I have been working at the Muscular Dystrophy Association’s National office in Chicago. This is my first job since graduating from college (I attended Illinois State University and graduated with a degree in broadcast journalism in May 2015), and it truly has been an eye opener. For starters, the people . . .
It’s the final week of MDA Shamrocks sales, and Lowe’s and many other retailers across the country still have Shamrocks available. As we head into the final days of the 2016 MDA Shamrock season, please continue to encourage your friends and family to support MDA by purchasing Shamrocks wherever they are sold. And don’t forget to . . .
Editor’s note: This blog is adapted from remarks Joe delivered today at the opening session of the 2016 MDA Clinical Conference MDA has been a part of my family’s life ever since I was diagnosed with SMA Type 2 at the MDA Care Center at Children’s Hospital Colorado, and being a part of the MDA family has . . .
One of the best parts of being MDA’s National Goodwill Ambassador is getting to travel the country to places I’ve never been before. Visiting Daytona Beach, Florida, to attend Harley-Davidson’s legendary Bike Week allowed me to indulge my deep love of warm weather, palm trees and beach-side al fresco dining. As a Colorado resident, I’m . . .