MDA Programs
Claiming Success
The Year of Independence is the perfect time to celebrate individuals in our MDA community who are shattering expectations and forging forward to achieve their goals.The personal story of the Honorable Robert Pipia, a judge in the District Court of Nassau County, New York, who lives with an undiagnosed neuromuscular disease, proves the power of resilience and advocacy.
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A Successful In-Person Conference
In mid-March, more than 1,000 people gathered in Nashville, Tennessee, for MDA's 2022 Clinical & Scientific Conference."It's a delight to meet again in person," said MDA President and CEO Don Wood, PhD, in a welcome address. "For many of you, it's the first time on a plane in two years."
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MDA's Care Center Network Expands
We’re welcoming 13 new hospitals and healthcare institutions to the MDA Care Center Network. These Care Centers provide access to specialized care, clinical trials, research, treatments, and education for individuals living with muscular dystrophy, ALS, and other neuromuscular diseases. The network includes more than 150 Care Centers.
Read MoreMDA Summer Camp Primes Kids for Independence
When Matthew and Jacob Rovenstine first went to MDA Summer Camp in Arizona in 2018, the brothers were 10 and 8, respectively. They live with collagen VI muscular dystrophy, a type of congenital muscular dystrophy, and at the time, their mom Becky feared that her shy boys might have trouble being away from home for the first time.
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Leading the Quest for Change
For years, MDA has worked to empower people living with muscular dystrophy, ALS, and related neuromuscular diseases to reach their fullest potential. And while strides have been made through innovations in care, research, and advocacy, there is more work to do. So this year, we're going bigger. We're declaring 2022 the Year of Independence.
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View From the Top
Hiker Skye Lemmen raised funds for MDA while trekking the Pacific Crest Trail When Skye Lemmen, of Grand Rapids, Michigan, decided to hike the Pacific Crest Trail, she knew she wanted her endeavor to support MDA and the neuromuscular disease community. So, while hiking the approximately 2,650 miles of trail, which extends from the Mexican border to the Canadian border in the Western United States, Skye raised more than $5,000 for MDA through Donor Drive. Inspired by her dad, who lives with facioscapulohumeral muscular dystrophy (FSHD), Skye wanted to support MDA for the assistance her family has received over the years.
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MDA Q&A: Let's Talk
The MDA Resource Center is available to provide one-on-one support. Here, Resource Center specialists answer Quest readers’ questions. Q: How can I find a therapist who knows about mental health and living with neuromuscular disease? —Jeffrey, New York First, we applaud you for prioritizing your mental health. Because neuromuscular diseases are considered rare, it might be difficult to find a mental health professional who is familiar with a specific disease. We recommend looking for a therapist who has worked with people living with chronic health conditions. Consider asking if they are also willing to counsel your family members, as a neuromuscular disease can also affect loved ones in their own ways.
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STEM Connections
As part of MDA's STEM (science, technology, engineering, and math) Connections program, MDA representatives sat down with experts from General Motors (GM) in July 2021 to discuss STEM education and careers.The panel was co-moderated by MDA Ambassadors Justin Moy and Amanda Zurek, both of whom are pursuing careers in STEM-based fields, and it featured engineers, designers, and innovators from GM. Together, they discussed their experiences with STEM careers, how they are working to improve accessibility and address sustainability, and the importance of encouraging youth of all abilities and backgrounds to enter STEM-based fields.
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Education Within Reach
To make planning for and going to college easier for students with neuromuscular disease, MDA launched a new online workshop called Access to Education: Higher Education. This no-cost educational program, available on-demand, offers an overview of common considerations, tips for choosing a school, information on financial preparation, and guidance on finding support if students encounter access barriers during their higher education experience.
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One Bike, Four Stories
Chris Benyo planned to push his wife, Denise, who lived with amyotrophic lateral sclerosis (ALS), over the finish line in her racing wheelchair, or duo bike, in the Bank of America Chicago Marathon in 2016. When she passed away before the race, he pushed the bike filled with mementos of her instead. He crossed the finish line holding Denise's photo. After the race, he donated the bike to MDA's Team Momentum.
Read More- Recent Quest Issues
- Quest Issue 2, 2022
- Quest Issue 1, 2022
- Quest Issue 4, 2021
- Quest Issue 3, 2021
- Quest Issue 2, 2021
- Quest Issue 1, 2021
- Quest Issue 3, 2020
- Quest Issue 2, 2020
- Quest Issue 1, 2020
- Quest Issue 4, 2019
- Quest Issue 3, 2019
- Quest Issue 2, 2019
- 2019 Conference Edition
- Quest Issue 1, 2019
- Quest Fall 2018
- Quest Summer 2018
- Quest Spring 2018
- Quest Winter 2018
- Quest Fall 2017
- Quest Summer 2017
- Quest Spring 2017
- Quest Winter 2017
- Quest Fall 2016
- Quest Summer 2016
- Quest Spring 2016
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MDA Resource Center: We’re Here For You
Our trained specialists are here to provide one-on-one support for every part of your journey. Send a message below or call us at 1-833-ASK-MDA1 (1-833-275-6321). If you live outside the U.S., we may be able to connect you to muscular dystrophy groups in your area, but MDA programs are only available in the U.S.
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