Do You Know ALS? Meet Sandy.

In 2018, Sandy Morris, wife and mother of three, was diagnosed with amyotrophic lateral sclerosis (ALS) at the age of 51. Sandy is a passionate advocate for ALS research who aspires to make ALS a priority on this planet with the help of MDA and I am ALS. She has a powerful support group in . . .

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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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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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Planned Giving: A Different Kind of Donation

On Dec. 23, 2018, the MDA office of Minnesota and the Dakotas received its biggest gift ever — and it came as a surprise from one man who felt connected to MDA’s mission. Steven Williams, a native of Clarkfield, Minn. and a Vietnam War veteran, graduated from college in the mid-1970s with a degree in . . .

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For Lainie Ishbia, CMT and Personal Style Aren’t Mutually Exclusive

Growing up with Charcot-Marie-Tooth disease (CMT), Lainie Ishbia learned about living with invisible disability — experiencing the daily struggle of movement without looking, outwardly and obviously, as if that’s the case. She also learned, once ankle-foot orthotics (AFOs, or braces) made her disability visible, those devices designed to help make movement easier can also make . . .

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