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.
posted on October 3, 2013 - 9:05am
Quest Vol. 20, No. 4
In kindergarten, Mo Gerhardt played tee ball and soccer, and while his hand-eye coordination was excellent, his strength wasn’t. Matthew (“Mo”) Gerhardt of Bath, Mich., will be 36 years old this fall.
posted on October 3, 2013 - 9:04am
Quest Vol. 20, No. 4
Nathan enjoys going to the beach, an activity that's been made easier by an all-terrain vehicle chair. When Nathan Jenkins of Greenville, S.C., was born in November 2003, he was “monstrously tall,” says his mother, Lisa.
posted on October 3, 2013 - 9:03am
Quest Vol. 20, No. 4
Although it was difficult in the beginning, Carol Abraham says she doesn't give wearing her braces a second thought anymore. Carol Abraham, 52, of Twin Lakes, Wis., is a retired occupational therapist who enjoys doing crafts and teaching at her church.

People from MDA's SMA community share their experiences in an effort to raise awareness of the disease and its effects

posted on August 29, 2013 - 10:37am
The experiences of people with spinal muscular atrophy (SMA) teach and help raise awareness about the disease, and are inspiring — and often entertaining — as well. For a wealth of personal stories, anecdotes and perspectives about transitioning to adulthood with a muscle disease, check out the MDA Transitions Center blogs penned by members of MDA's SMA community:

A father’s vision for helping his son with DMD deal with depression has grown into a popular restaurant and training ground for people with disabilities

posted on July 1, 2013 - 9:15am
Quest Vol. 20, No. 3
“Employment to someone with a disability is a privilege, not an obligation,” says Garth Larcen. “People with disabilities, they just want to be part of a team.” If anyone should know what he’s talking about, it’s Garth. He’s speaking from both knowledge and experience — as a father, as an employer and as a job trainer.

The gnawing need for meaningful relationships is a survival signal. Just like a fever, it should not be ignored.

posted on July 1, 2013 - 9:08am
Quest Vol. 20, No. 3
People need people. Human beings are wired to be a part of something more than themselves, instinctively uniting as couples, bonding as families, joining groups, building cities and creating civilizations. A social species, people who are forced to live in isolation or even just perceived social isolation (loneliness) do not fare well.

The Ms. Wheelchair America program gives women with disabilities a platform for breaking down barriers and promoting important change

posted on July 1, 2013 - 9:07am
Quest Vol. 20, No. 3
Wanted: Articulate, dynamic, driven women with a strong vision for change in the world. Must be willing to break down barriers and connect with people of all backgrounds. Public speaking and statewide travel required. Candidates will be provided with expert training in handling media inquiries, optimizing social media networking, public speaking, current legislative and public policy trends, self...