How to Set Goals for Personal Growth and Wellness

When he was 15 years old, Elijah Stacy had a dream: to end Duchenne muscular dystrophy (DMD), the disease that affects him and thousands of other people. So, he decided to start a nonprofit called Destroy Duchenne to support advancing gene-editing and gene-therapy technologies to find a cure for DMD.  To achieve his ambitious goal, . . .

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MDA Shamrock’s 40th Birthday T-shirt: The Mind Behind the Design

To commemorate the 40th Birthday of MDA Shamrocks with a special edition T-shirt, the MDA enlisted the talent and expertise of freelance graphic designer, Dustin Clark. Dustin, a 28-year-old designer and illustrator living with Becker muscular dystrophy, is passionate about the incredible impact that MDA Shamrocks has had on the neuromuscular community. He was excited to . . .

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Quest for Success: Nicole Lahoud

As the Muscular Dystrophy Association (MDA) continues our commitment to empowering people living with neuromuscular disease, we are excited to present our 2022 blog series: “Quest for Success”. Success looks different to everyone and this monthly blog will detail the different paths that individuals with neuromuscular disease have taken to reach their potential and the . . .

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MDA Summer Camp: Zach’s Note to Younger Self

MDA Summer Camp has been a favorite tradition for our young community for over 65 years.  For one week every year, children and teens receive the opportunity to gain critical life-skills, including self-confidence, independence, and self-advocacy, while making lifelong friendships in an inclusive and accessible environment. In 2020, in an effort to keep this popular . . .

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Life-Saving PJ’s Protocol Was Inspired by a Person With DMD

At Daytona International Speedway, if you see a silver wheelchair-accessible minivan flash by outside the stadium, it’s shuttling people who need assistance getting around the expansive venue. Philip James “PJ” Nicholoff would be happy knowing that his family donated his beloved van to the speedway, and its back windows display signage honoring him. A big . . .

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Life at the Intersection of Disability and LGBTQ

When Elisa Ramos, a 28-year-old Central Valley, California, resident with myasthenia gravis (MG), walks into a restaurant with her partner, she’s keenly aware of the looks. “I already face discrimination and displacement because of my disability,” she says. “My scars, medical equipment, and dragging feet get attention, and being with a female partner amplifies that.” . . .

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International Day of Women and Girls in Science: MDA’s Spotlight on Dr. Angela Lek

In recognition of International Day of Women and Girls in Science, the Muscular Dystrophy Association (MDA) is honored and excited to highlight the career and accomplishments of Dr. Angela Lek, PhD. International Women and Girls in Science Day, February 11, endeavors to acknowledge and celebrate the invaluable role that women and girls play in accelerating . . .

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Quest for Success: Alexa Dectis

As the Muscular Dystrophy Association (MDA) continues our commitment to empowering people living with neuromuscular disease, we are excited to kick off our 2022 blog series: “Quest for Success”. Success looks different to everyone and this monthly blog will detail the different paths that individuals with neuromuscular disease have taken to reach their potential and . . .

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It Helps to Have a Friend Who Understands Your Neuromuscular Disease

For the first six months following her amyotrophic lateral sclerosis (ALS) diagnosis, Valerie Geerer’s instinct was to keep the news to herself. “My husband and close family and friends knew, but I didn’t feel comfortable sharing it with co-workers or acquaintances,” she says.  Then she met Dora Sementilli. Like Valerie, Dora was in her 50s . . .

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Talking About Your Child’s Diagnosis Helps Build Your Support System

When Stephanie and Wayne Donato received the diagnosis of Duchenne muscular dystrophy (DMD) for their son Maximus, who was 4 at the time, in 2017, “we were completely blindsided,” Stephanie says. The couple quickly realized there were a lot of people they needed to tell, and they started with their own family. The Donatos also . . .

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