A Tale of Two Siblings: Twin MDA Volunteers Forge Lifelong Connections — and Careers

Twin brother and sister Michael and Amy Schleicher’s story starts where a lot of kids’ stories do. They looked up to their big brother, Matt, and when he did something cool, Michael and Amy wanted to do it, too. In the case of the fateful summer that would point the twins in a long-term direction, . . .

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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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For MDA Executive Director Patrick Cusick, a Diagnosis Led to a New Direction

Patrick Cusick’s journey with MDA — and with muscular dystrophy — started 12 years ago, in, of all places, a life insurance office. Twenty-nine at the time, the Ohio native and his wife were expecting their first child, and making preparations as parents (or soon-to-be parents) do. Securing life insurance meant taking some medical tests; . . .

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For Karen Cole, LGMD Advocacy Began With a Diagnosis 20 Years in the Making

Every year on Sept. 30, people around the world wear lime green and come together online and in their communities to celebrate Limb-Girdle Muscular Dystrophy (LGMD) Awareness Day. Now four years old, LGMD Awareness Day has been embraced by the LGMD patient community as a way to raise awareness and honor individuals living with the . . .

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Knocked Down By Disease And Depression, I Got Back Up

Originally published in the Hartford Courant on July 22, 2018. To see the original article, click here. For many years I was consumed by worry and bitterness, thinking I was the only one who was given an unfair lot in life. My body, once athletic and fit, was weakening from the uncompromising progression of an adult-onset neuromuscular disease . . .

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