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 . . .
Ryan Farnsworth, 31, is passionate about spreading a positive message to others going through a tough time. Since receiving an ALS diagnosis in 2015, Ryan has made a conscious effort to maximize every moment of every day. As he has grown weaker, he has become even more determined to make a lasting impact on the . . .
Since his call-up to the Philadelphia Phillies in August 2017, Rhys Hoskins has taken Major League Baseball by storm. A prolific hitter, Rhys burst onto the scene late last summer with a home run barrage that made national news and shattered rookie records along the way. In just 10 months he has become the face . . .
In 2007, Karen Toennis received an unexpected phone call. On the other end of the line was Dr. Stanley Appel, the neurologist who cared for Karen’s husband, Mike, during his 13-year battle with ALS. They had not spoken since Mike’s passing the year before, but Dr. Appel had a question for Karen. “At first I’m . . .
Ches Hutchinson began his MDA volunteer journey with a long walk.
In 2011, a coworker whose son attended the Minnesota MDA Summer Camp reached out to Ches. The camp was in need of volunteers — specifically men — and Ches’ little brother had just graduated from high school. Might he be interested, Ches’ coworker asked?