Ode to Mascara
Mindy Henderson, who has SMA, shares her story of love and loss with one of America’s most popular cosmetics.
Tag: Personal Stories
What Happens When the Caregiver Needs Care?
When Erin Brady Worsham’s husband and primary caregiver was temporarily unable to provide care, major adjustments had to be made.
“Joe Akmakjian: National Ambassador” Season One Recap
Joe Akmakjian had a whirl wind year serving as MDA’s first adult National Goodwill Ambassador! Check out some of his highlights from 2016.
Bye Bye, Betty: Things I Learned on my First Trip With Medical Equipment
When I was 25, I took an unlikely job as an editor at a travel magazine. As a journalism graduate, the editing part of the job was a natural fit; as someone who’d never flown on a plane, the traveling part seemed a little daunting. I’d been diagnosed with Charcot-Marie-Tooth disease six years prior, but . . .
MDA Holiday Gift Guide
Few things are better than the perfect gift — except, perhaps, the gift that gives love to the recipient and to a whole community as well. This season, surprise your family with gifts that give to MDA families — and MDA research — too. Good Reads Stack your family bookshelf with must-reads that help explain . . .
Space Anthropologist Keirsten Snover Encourages Others to Pursue Scientific Passions
For space anthropologist Keirsten Snover, living unlimited means going where no man or woman has gone before. “As far back as I can remember, I always loved science,” Keirsten says. “I have always been fascinated by all the different fields.” Keirsten has mitochondrial myopathy. As a result of the disease’s progression, she uses a wheelchair . . .
Raymond Walter: Brilliant U of A Graduate Student with DMD Lives Unlimited By Pursuing His Passions
Raymond (Ray) Walter, who has Duchenne muscular dystrophy, graduated college with degrees in physics, mathematics and economics at age 18. He is currently continuing his doctoral studies in mathematics and physics at the University of Arkansas, where he is a Distinguished Doctoral Fellow and National Science Foundation Graduate Research Fellow. Raymond has also recently been . . .
A Clinical Trial, a Trip to Target and the Approval of Exondys 51
For most, a trip to Target is just a way to cross off another item on a lengthy to-do list, or a quasi-addictive way to reduce stress via retail therapy. For 14-year-old Ethan Pyles and his mother, Sandra, a trip to Target brought renewed hope, grateful hearts, and optimism for thousands of boys who have . . .
“Walk Like Penguins” : My Dad’s ALS Story & A Children’s Book
I had never heard of ALS (amyotrophic lateral sclerosis) before my dad was diagnosed. Those three letters had no significant meaning to me or my family. Now, they are still all around us, in our day to day, swirling through our minds like windswept leaves. They are forever present, always staring back at us, in . . .
MDA Lock-Up Donors & Local Firefighters Help Family Find Strength in Numbers
Aaron, 16, is an avid fan of rock music from ’70s to the ’90s — he looks up all the facts about songs, composers and artists as he is listening to them. “He is a veritable fount of trivia on rock music,” says his dad, Richard. Aaron, who was diagnosed with muscular dystrophy in early . . .
