An expression of the live unlimited spirit, stories and voices of the MDA community
A strong-willed man and a fun-loving prankster, Ronnie Townsend was “a character,” according to his sister Karen Hicks. Being diagnosed with ALS didn’t change that one bit. “He was a brother and he aggravated me to death,” Karen says, chuckling. “He aggravated me until the day he died.” She was the youngest girl in the family, . . .
Turning 16 years old is a pretty big deal, but Jordan George didn’t want that milestone birthday to be all about her. She wanted to give back. Jordan celebrated her sweet 16 in April by giving a gift to MDA — $1,600 in donations that she had asked for, instead of presents, for her birthday. . . .
Over the last six months, I’ve had the pleasure of meeting great people all over the country. This week’s trip to Georgia was no exception. The Mansfield Golf Classic is a prime demonstration of the commitment our sponsors have to helping individuals and families living with muscle-debilitating diseases. Mansfield Oil Company’s 30-year partnership with . . .
Kierra Hometown: Waxhaw, NC Age: 11 Diagnosis: Ullrich muscular dystrophy Favorite School Subject/Activities: I enjoy reading, writing and art. Favorite People and/or Pets: I love my parents and big brother, Aidan. I have the most wonderful and supportive friends, teachers and doctors. However, my most favorites are all of the camp counselors from MDA Summer Camp. Interests: I . . .
Hunter Hometown: Burnsville, MN Age: 10 Diagnosis: Charcot-Marie-Tooth Disease (CMT), which causes muscle weakness and atrophy, and some loss of sensation in the feet, the lower legs, the hands and the forearms. Favorite School Subject/Activities: Art and time in the library. Favorite People and/or Pets: I live with my parents, Alan and Dana, and my younger brother Hayden (7). . . .
With both of her sons living with muscular dystrophy, MDA Muscle Walk is personal for Tammy Gregory. “I kind of blamed myself when they were first diagnosed,” Tammy says, explaining that she didn’t know she was a carrier of flawed genes that cause Becker muscular dystrophy (BMD). “I don’t blame myself now, but it’s hard . . .
Caregivers, simply put, are the people who make my life happen. And hiring and managing caregivers is essential to being an adult with SMA living life on my terms. But, no matter how many times I have to do it, hiring new personal care attendants (PCAs) is one of my least favorite things. Let me tell . . .
Evangelos Kiskinis, assistant professor in the department of neurology & physiology at Feinberg School of Medicine, Northwestern School of Medicine in Chicago, was awarded an MDA research grant totaling $300,000 over three years to decipher the degree of mechanistic overlap in different forms of amyotrophic lateral sclerosis (ALS). Using cutting-edge technology, Kiskinis will activate ALS . . .
For the founders of the ALS Bike Trek in Minnesota, the event is so much more than just a ride in the park. Founder Justin Rumley lost his dad, Steve, to ALS in 2009. Rett Landers’s brother, Jim, passed from Lou Gehrig’s disease on Thanksgiving in 2008. And Everett Myers’s father, Victor, died just 26 . . .
Thirteen-year-old Dana Parrott has a live unlimited motto, which she faithfully follows. “I may have muscular dystrophy,” she says. “But muscular dystrophy don’t have me!” In so doing, Dana is showing the world that her limits don’t define her. To every doubter and every “you can’t do that,” she says, “watch me.” Diagnosed with limb-girdle muscular dystrophy (LGMD) . . .
Sign up for MDA news & updates.
