Stacy Coleman wrote “The Big Heart Hero,” a short children’s story, to inspire her two young sons Hayden and Mason, who live with Charcot-Marie-Tooth (CMT), and others to find strength in every day moments and to never give up on what you want to become. Stacy, who also lives with CMT, and her family are active in the MDA community in Texas.
When Jone See, a devoted mother of five and doting grandmother to nine, was diagnosed with ALS in December 2014, her loving family and large group of friends channeled their energy into raising money for a cure through the ALS Bike Trek MN. Jone, who passed away on May 3, won’t be there to cheer the team on in person this year, but her spirit, optimism and hope for a cure lives on.
In the decades since Leslie Krongold’s mother died at the age of 56, she has learned that they likely shared a neuromuscular disease — myotonic dystrophy — and, as Leslie approaches her own 56th birthday next year, she feels more committed than ever to defying the odds her my mother couldn’t.