An endurance challenge, a cherry picker and a myasthenia gravis diagnosis
Gina Pieroni’s passion for MDA fundraising started with an endurance challenge, a cherry picker and desire to help others.
Category: Adults
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.
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 . . .
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 . . .
“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 . . .
Woman with Miyoshi myopathy Works Hard, Plays Hard and Muscle Walks With All Her Heart
Melanie Carson has peered into the Grand Canyon and craned her neck looking up at the giant Redwoods of Northern California. She’s felt the mist of waterfalls in Hawaii and gazed at Yosemite’s Half Dome. She’s done it all, and wants to do more. That’s all while living with a rare type of Limb-girdle muscular . . .
Chris and Denise Benyo: A love story written by faith, running, eHarmony and an ALS diagnosis
In the fall of 2009, I met a girl. Not in the traditional way — I met Denise via eHarmony. Yes, we were an eHarmony success story. We often joked about the eHarmony commercials with the two incredibly good-looking people dancing in a beautiful garden or around a fountain. We thought how cool it would . . .
Pennsylvania Woman With CMT Breaks Silence by Starring in a Documentary
Bernadette Scarduzio doesn’t like secrets. Her life is an open book — in fact, now it’s a documentary. But Bernadette and her struggles didn’t start out in the spotlight. Her disease was a secret. Born with Charcot-Marie-Tooth Disease or CMT, an inherited disorder which impacts the nerves in the legs and arms, Bernadette was in . . .
From an MDA Care Center to MDA’s National Office: Our New Digital Marketing Manager Reflects on Having CMT
September is Charcot-Marie-Tooth Awareness Month. And this month — this year — I’ve never been more aware of CMT. I was diagnosed when I was 19, after a series of falls and half a semester of college note-taking during which I suddenly couldn’t hold a pen. I couldn’t tie my shoes. I struggled with buttons. . . .
