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 . . .
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 . . .
Jenni Gold has been writing, directing and producing film shorts, movies and TV shows for more than 20 years. She’ll tell you, since she was a kid making movies with a Hi8 camcorder, she’s been in love with Hollywood for a lot longer. She’ll also tell you there’s a problem with it. It’s failing the . . .
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 . . .
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; . . .
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 . . .
At 22, when I graduated from college, I, like so many of my fellow millennials, moved back home. I spent two transitional years in the room where I’d grown up, unicorn wallpaper still casting magic above the bed, and then, one weekend, I packed my clothes and moved out. I’d lived alone in my college . . .
Since 1897, the Boston Marathon has held a special place in the hearts of Bostonians. Held every third Monday in April, the Boston Marathon is one of the most famous races in the world, attracting runners of all abilities to a beautiful, grueling course that begins in the hilly western suburbs of Boston and ends . . .
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 . . .
Growing up, Marc van de Rijn was always interested in medicine. After briefly considering a career working with computers, a sudden health challenge after his freshman year of college made him realize that instead of sitting behind a desk, he wanted to work with people and become a doctor. “After my freshman year, I suffered . . .