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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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Understanding Amyotrophic Lateral Sclerosis

Amyotrophic lateral sclerosis (ALS) is a degenerative motor neuron disease typically diagnosed in adults in middle age or later. About 18,000 people in the United States are currently living with ALS, making it one of the more common neuromuscular diseases, and yet there is still a lot for scientists to learn about why it occurs and how to treat it.

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Funding Accessible Vehicles

When my mom and I had to purchase a new accessible van about two years ago, we were not in a comfortable financial situation to do so. I was going into my junior year of college, and we planned to hold off until I graduated.Unfortunately, that plan changed when our van died for the final time a couple of days before my 20th birthday. We ended up purchasing a used Dodge Caravan that kneels to reduce the steepness of the ramp and has tie-downs to secure my power wheelchair. My mom took out a loan to help pay for it. Fortunately, the mobility dealer supplied us with a list of grants that we might be eligible for.

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The Smart Home’s New Story

You've probably heard of the "smart home." For close to two decades, it has been a regularly covered topic across all sectors of media. Each year, a story in a magazine, on prime-time news, or in an industry outlook report shows a futuristic take on a home that is automated to the point that it appears to read its occupant's mind. But what began as "the home of tomorrow" has become increasingly practical as new products and technology are rolled out on the market.

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Service With a Smile and a Wag

At Payton Rule's high school in Missouri, the school year always ended with field day — a break from academics where kids demonstrated school spirit and played fun games on the athletic field located down a steep hill. Payton, who has Charcot-Marie-Tooth disease (CMT) and uses leg braces, missed the celebration during her first years at the school, because she could not safely maneuver the hill and the field on her own.

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Profiles in STEM

Although students with disabilities indicate interest and intent to pursue science, technology, engineering, and math (STEM) careers at the same rates as students without disabilities, they do not receive an undergraduate degree or pursue STEM graduate studies at the same rates. This fact was reported by the National Institutes of Health (NIH) in 2021. They also cited several barriers, for people with disabilities, including lack of recruitment and engagement and an absence of mentors and role models.

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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.

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One Day at a Time

On my 28th birthday, I recognized that something was wrong. I used to be able to jump and touch the rim of a basketball hoop. But on this day, I was missing by a foot.I remembered learning in a high school science class that a sudden loss of athleticism was a sign of a neuromuscular problem, but I didn’t want a medical diagnosis altering my plans. So, I decided to shut it out of my mind until it became a real concern.

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Dynamic Duo

Some of the best ideas — and friendships — are born from moments of necessity. When 13-year-old Jackson Saville, who lives with spinal muscular atrophy (SMA), heard his mother's plan to keep him busy with educational activities last summer, he sprang into action."I had a better idea than the fun worksheets, which aren't very fun at all," says Jackson, who lives in Virginia Beach, Va. "I wanted to start my very own business."

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