Category: Personal Stories

Personal Stories, Young Adults, Adults, Muscle Walk, Living with Muscular Dystrophy, Advocacy, Fundraising & Events

MDA Chicago Muscle Walk MC Billy Z is Changing the World One Slice at a Time

Rebecca Hume

Eight years ago, if you were looking for Billy Zureikat you would find him on the basketball court. The 38-year-old, former ESPN producer and current logistics manager’s passion was on the court. That all changed when years of symptoms and eventually a diagnosis in 2021 of limb girdle muscular dystrophy (LGMD) began to impact his . . .

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Personal Stories, Kids, Young Adults, Adults, Living with Muscular Dystrophy

Outdoor Recreation Opportunities for Everyone

Claire Sykes

Ben Schwartz doesn’t let Duchenne muscular dystrophy (DMD) stop him from enjoying the great outdoors. This 9-year-old from Des Moines, Iowa, has wheeled up massive sand dunes at Great Sand Dunes National Park and Preserve in Colorado, strolled paved trails at Guadalupe Mountains National Park in West Texas, and skied down a snowy slope at . . .

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Personal Stories, Kids, Young Adults, Adults, Living with Muscular Dystrophy

Quest for Success: Matthew Lawson

Rebecca Hume

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

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Volunteering, Personal Stories, Fundraising & Events

Father-Son Contribution to the 35th Annual Ride for Life

Mindy Henderson

The relationships we at MDA form with our community is one of the most rewarding parts of our mission. One such relationship is our friendship with Jon Burcaw and his son Shane. As a long-time supporter of Schaeffer’s Harley-Davidson – a member of the Eastern Harley-Davidson Dealership Association (EHDDA) – Jon became a supporter of . . .

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Personal Stories, Volunteering, Kids, Young Adults, Adults, Advocacy

MDA Recognizes the Esteemed Members of Our Volunteer Advisory Committee

Rebecca Hume

For over 70 years, the Muscular Dystrophy Association has led the way as the #1 Voluntary Health Organization in the U.S. for people living with neuromuscular diseases. Through volunteer committees, boards, community events, and Summer Camps where kids build confidence and independence, volunteers are tightly woven into MDA’s fabric. We could not build on our . . .

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Personal Stories, Kids, Young Adults, Adults, News, Research, Living with Muscular Dystrophy, Advocacy

Promoting Diversity in Rare Disease Research

Larry Luxner

Drug companies are developing more therapies for rare disease patients — and doing it faster — than ever before. But when it comes to enrolling minorities in clinical trials, the US track record is lagging behind. That subject was the focus of a March 15 session during the 2022 MDA Clinical & Scientific Conference in . . .

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Volunteering, Personal Stories, Fill the Boot, Kids, Young Adults, Adults, Muscle Walk, Summer Camp, Living with Muscular Dystrophy, Fundraising & Events

MDA Welcomes National Volunteer Month with Gratitude

Rebecca Hume

For over 70 years, MDA has led the way as the #1 Voluntary Health Organization in the U.S. for people living with neuromuscular diseases. We build on our legacy of innovation in research, care, and fundraising by celebrating National Volunteer Month, to thank our volunteers who work tirelessly to support MDA’s mission and the families . . .

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Personal Stories, Kids, Young Adults, Adults, Living with Muscular Dystrophy

Quest for Success: Tana Zwart

Rebecca Hume

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 details the different paths that individuals with neuromuscular disease have taken to reach their potential and the steps . . .

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Personal Stories, News, Living with Muscular Dystrophy

Living Through War in Ukraine with a Neuromuscular Disease

Larry Luxner

When Yuliya Matyushenko was 12 years old, the Paris-based rare disease organization Eurordis featured her on a poster promoting Rare Disease Day 2015. In late February, the young woman with spinal muscular atrophy (SMA) was hiding in a bare concrete basement in Kharkiv as Ukraine’s second-largest city, located only 35 kilometers from the Russian border, . . .

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