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.”
Justin Rumley is using his entrepreneurial skills to fundraise for ALS research in memory of his father Steve, who lived with the disease. Learn more about Justin’s Coffee for a Cure and ALS Bike Trek MN fundraisers.