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?
In 2015, Illinois native Rob Besecker hiked to the base camp of Mount Everest, an impressive physical feat that only a few thousand achieve in a given year. Reaching this campsite 17,500 feet above sea level is a grueling challenge that requires weeks of hiking through rough terrain and thin air. Yet for Rob, 43, . . .
Last week, I had the opportunity to attend the 2018 MDA Clinical Conference in Arlington, Va., to write about it from the patient’s perspective. I am always excited to attend conferences that bring together stakeholders in the neuromuscular disease community. I love meeting fellow patients, and I especially love learning about the latest scientific and . . .
One year ago, if you would have asked me to say the words Duchenne muscular dystrophy, I couldn’t. It was too new, too fresh, too difficult of a reality to process. One year ago I fell to my knees crying and physically shaking with fear, anxiety and anger as I hung up the phone with . . .
Kevan Chandler, who lives with SMA and traveled through Europe in 2016 in a backpack, is heading to China. Along the way, he hopes to inspire others and “demonstrate that life is full of possibility and hope.”