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Why MDA’s Kickstart Program Is a Game-changer for Gene Therapies
All of the more than 400 neuromuscular diseases MDA covers are rare. However, within many of these disorders, there are dozens of subtypes, often characterized by the genetic mutations that cause them. Many specific diagnoses in the neuromuscular community are ultra-rare, affecting fewer than 1 in 50,000 people in the United States. This presents unique…
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WAV Taxis and Rideshares Open Doors for Inclusive Transportation
They say you can get anything in New York City — and that includes wheelchair-accessible vehicles (WAVs) through taxi companies and rideshare apps. Uber’s and Lyft’s New York fleets include WAVs that enable people with disabilities to get a ride on demand, just as many other busy commuters do. Aaron Marks’ law firm is representing…
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MDA Milestone: How ‘Fill the Boot’ Was Born
In 1952, a group of families affected by muscular dystrophy approached a Boston fire station to ask fire fighters from Local 718 to help them fight the disease. Responding enthusiastically, the fire fighters took to the streets with their boots in hand, asking Boston residents to make donations to MDA. The first Fill the Boot…
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Navigating Life with MDA Community Education Programs
The neuromuscular community encompasses a wide array of experiences. No two disease journeys are the same. But on any journey, there are points where a guide is essential. Marissa Lozano is MDA’s Director of Community Education. MDA’s Community Education program strives to be that guide for individuals and families, providing information directly from experts, opportunities…
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Advocating for Himself Helps Matt Curcio Serve Others
Matt Curcio has spent his life advocating for his inclusion and accessibility needs. Now, he spends his career ensuring others with disabilities have accommodations in the workplace and when traveling. The 34-year-old father of four splits his professional time between his roles as Director of Employment Supports at a nonprofit focused on providing job opportunities…
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How We’re Changing the Narrative on Disability in Hollywood
For most of my life, I accepted stories about what it meant to be disabled. Stories that told me everything would be harder. That love would be rare, that success would be a miracle, that I was somehow broken. These stories were not written by me. They were written by society, by the media, by…
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Understanding Congenital Myasthenic Syndrome: Causes and Treatments
Congenital myasthenic syndrome (CMS) is a rare genetic condition that disrupts communication between nerves and muscles, leading to muscle weakness and fatigue that fluctuates over time rather than progressively worsening. Due to its rarity, CMS is often difficult to diagnose and may be overlooked in childhood. Symptoms typically appear within the first three years of…
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Is Train Travel a Wheelchair-Friendly Alternative to Flying or Driving?
When the Zelaya family travels from their home in Brooklyn, New York, to Boston or Washington, DC, they take an Amtrak train. Leah Zelaya, a former MDA National Ambassador, and her dad, Jaime, live with scapuloperoneal spinal muscular atrophy (SPSMA). Leah (left) and Bevi Zelaya (right). “When we travel on an airplane, we rush to…
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Motherhood, my life purpose, makes caregiving easier
It’s been a couple of weeks since my last column. I’ve missed writing them. I can never explain how therapeutic it is for me to share my life as a caregiver through writing. I have seven children: Lexi, 24, Max, 19, Chance, 18, Rowen, 16, Charlie, 14, Mary, 10, and Callie, 3. Max, Rowen, and…
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Accessible Travel on a Budget: Smart Tips for Exploring Affordably
Travel opens doors to new perspectives, cultures, and experiences. But for many, exploring the world can seem like an unattainable luxury — too expensive, too complicated, or simply inaccessible. The good news? Affordable and accessible travel is more possible than ever with the right planning and resources. Whether you’re dreaming of a weekend getaway or…
