2019 MDA Engage LGMD Symposium Scheduled in Richmond on May 18

At MDA, we believe in the power of research and the importance of building relationships among families, clinicians, and the scientists making discoveries to advance treatments and therapies. We invite individuals living with a neuromuscular disease, as well as caregivers and loved ones, to attend MDA Engage symposia taking place across the country. MDA Engage . . .

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Do You Know ALS? Meet Ed.

In 13 years, MDA’s Night of Hope Gala, hosted every fall in Atlanta, Ga., has raised more than $9 million dedicated to funding critical research focused on treatments for amyotrophic lateral sclerosis (ALS). And one of the event’s biggest champions is also one of the people it benefits most. Ten years ago, Atlanta resident Ed . . .

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Introducing New MDA National Ambassador Tana Zwart, and Checking in With Ambassadors Faith Fortenberry and Justin Moy

Since the early 1950s, not long after the Muscular Dystrophy Association’s formation, America’s young people living with muscular dystrophy and related neuromuscular diseases have stepped forward to share their stories, raise awareness of the need for treatments and cures for rare diseases, and represent MDA’s mission with humanity and grace. More than 40 MDA National . . .

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2019 MDA Engage SMA Symposium Scheduled in Orlando on April 12

At MDA, we believe in the power of research and the importance of building relationships among families, clinicians, and the scientists making discoveries to advance treatments and therapies. We invite individuals living with a neuromuscular disease, as well as caregivers and loved ones, to attend MDA Engage symposia taking place across the country. MDA Engage . . .

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Education in Your Community

At MDA, we believe in the power of community and the importance of building relationships with families going through similar experiences. We invite individuals living with a neuromuscular disease, as well as caregivers and loved ones, to attend MDA Engage educational events taking place across the country. MDA Engage Community Education Seminars are one-day events . . .

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Strengthened by Spinraza, Marley Robinson is Tackling College — and Planning for More

Feb. 28 is Rare Disease Day, when the collective rare disease community raises awareness of the conditions with which we live and advocates for access to new novel treatments like Spinraza, the first FDA-approved disease-modifying drug for spinal muscular atrophy (SMA), a rare neuromuscular disease that affects people like 18-year-old Marley Robinson. Spinraza is making . . .

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Trexo Robotics Releases Trexo Home Walking Aid for Children

Joining a growing number of companies developing robotic devices for those living with mobility impairments, Ontario’s Trexo Robotics just launched the newest in its line of robotic walking aids specifically for children, the Trexo Home. Unlike the company’s Trexo Plus, a set of wearable robotic legs that attach to a walker for use in clinical . . .

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Elizabethtown College Seeks Young Adults With CMT for Survey About Social Life

Young adults living with Charcot-Marie-Tooth disease: You can help in a new study. Allison Eveler, a senior occupational therapy major at Elizabethtown College in Pennsylvania, is conducting an undergraduate research study to determine the impacts of CMT on the social participation of young adults. Allison, who herself lives with CMT, recognized a need for research . . .

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2018 ONEVoice Survey Results Gathered in a New Report

In January 2018, MDA partnered with Edge Research, an established research firm with extensive expertise working with patient advocacy organizations, to conduct an objective and thorough study among the neuromuscular disease community. This survey, a first-of-its-kind for MDA, was called ONEVoice and comprised 50 questions that sought to identify the needs of individuals and families . . .

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