26.2 Miles For a Cure: Runner With Muscular Dystrophy Joins Team Momentum Ahead of Chicago Marathon

Michelle Murphy is an avid runner. She routinely pounds the pavement through the neighborhoods of Albany, NY. When she needs a change of pace, she runs on the path through the park that skirts the Hudson River. Michelle even hoofs it to and from the gym. You’d never guess that the 24-year-old has Myotonic muscular . . .

Read More

An Intimate Look at a Life with ALS: Photos of a Marriage, a Family and — of Course — Love

Editor’s note:  Ray Spooner, a certified nurse midwife, who has ushered thousands of babies into the world, was diagnosed with ALS just a few months after dousing himself in the Ice Bucket Challenge of Summer 2014. An avid cyclist and fitness enthusiast, Ray knew he had little time before his physical capabilities would be taken from him. Shortly . . .

Read More

Participating in Clinical Research Means Giving of Yourself — Literally — to Science

The Informed Consent Authorization Form is 12 pages long. My husband, Allen Carney, reads it carefully, initials in several places and signs at the end. And that’s the easiest part of participating in a research project. Welcome to the world of giving your time and body to research for Facioscapulohumeral muscular dystrophy. My husband Allen, . . .

Read More

The Ride of Their Life

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 . . .

Read More

Passion in Action: Connecticut Teen Brings Enthusiasm to the Muscle Walk

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) . . .

Read More

Can We Talk?

  Can we talk?  Well, no, actually, we can’t talk… because I can’t really talk. Oh, I can make sounds, but those sounds seldom form themselves into recognizable words. Only my husband and son have the patience to try to understand me, and they’re pretty darn good at it!  My nurses try to guess, but . . .

Read More