Personal Stories

Exploring the unique dynamic — its blessings and occasional hurdles — of one sibling caring for another with neuromuscular disease

posted on October 8, 2015 - 9:51am
In a small Detroit apartment, Sam Barash, 32, lives with and cares for his 20-year-old, soon-to-be 21, sister, Angela Barash, who is living with myotonic muscular dystrophy and myasthenia gravis.

A tireless volunteer and advocate, Tennessee's Jan Blaustone wins MDA National Personal Achievement Award

posted on October 1, 2000 - 4:44pm
To Jan Blaustone, leadership means setting a positive example. Jan Blaustone Blaustone, 45, strives to be a model for others, whether she's writing, speaking, teaching, creating artwork or making a difference in her community.

Single mothers face the challenges of DMD with love, commitment and a little help from their friends

posted on October 1, 2000 - 11:18am
When a couple has a child with a neuromuscular disease, the condition has a profound impact has on the entire family — the parents' relationship with the children and with each other; the family's activities, finances and priorities; and everything else.
posted on April 1, 2000 - 12:30pm
Pam Rhatigan remembers the day in 1981 when she and her husband, Brian, finished their genetic counseling sessions at the University of Arizona's medical center. They'd gone to discuss the chances that a baby they might conceive could be born with spinal muscular atrophy, a genetic disorder of muscle-controlling nerve cells that Pam was born with in 1953. There was no family history and little...
posted on October 1, 1999 - 5:00pm
For Marybeth Waltman, a positive attitude is what sees her through her day as a government employee, community volunteer and wife. "I don't let anything defeat me," says Waltman, of Rocky Hill, Conn. "I get up in the morning and I know what I have to do."

Coping with facial weakness in FSHD

posted on June 1, 1997 - 3:34pm
Songs tell us we're never fully dressed without a smile and exhort us to pack up our troubles in our old kit bags and — smile, smile, smile. Smiling mouths tell us to buy everything from toothpaste and shampoo to diamonds and automobiles, and stylized "smiley faces" peer at us from posters and stickers. There's more space in the brain devoted to muscle control of the face than to any other...
posted on July 1, 1994 - 11:26am
Dr. Phillip Chance, 41, associate professor of neurology and pediatrics at the University of Pennsylvania, and Dr. Jim Lupski, 37, associate professor at Baylor College of Medicine's Institute for Molecular Genetics, have a lot in common as major players in MDA's genetics research in Charcot-Marie-Tooth disease.