Photo courtesy of Melissa Hadel Day 10 of 30 This is Melissa Hadel’s (@duchennewontstopusmd) story: My son, Brodie, doesn’t know his father. He loves his father and hopes he’s doing well, but they haven’t seen each other in four years. Brodie has had to adjust to living with my…
30 Days of MD
Photo courtesy of Renée White Day 9 of 30 This is Joseph White’s (@whiteriverartstudio) story: My name is Joseph. I was diagnosed with Becker muscular dystrophy when I was 9 years old. I’ve had it all my life, but I did not know it until I was…
Photo courtesy of Joe Jamison Day 8 of 30 This is Joe Jamison’s (@visitablecertification) story: My name is Joe Jamison, and my father has used a wheelchair my entire life. I grew up experiencing physical and attitudinal barriers on a weekly or daily basis when I was with…
Photo courtesy of Kristina Kelly Day 7 of 30 This is Kristina Kelly’s (@littleenginesm) story: In 2009, I was offered a role as a healthcare coordinator at the Muscular Dystrophy Association (MDA). It’s likely that I got the job based on my history working in neurology offices and…
Photo courtesy of Hawken Miller Day 6 of 30 This is Hawken Miller’s story: The Washington Post newsroom in the summer of 2019 was surreal. I had started writing for my high school newspaper, “The Bolt,” and now, here I was at the highest level of journalism, despite having…
Photo courtesy of Viola Dwyer Day 5 of 30 This is Viola Dwyer’s story: It’s taken me five years of marriage to realize that ours is not like an average person’s marriage. I have spinal muscular atrophy type 2, and my husband, Dan, has a traumatic brain injury…
Photo courtesy of Larry Liptak Day 4 of 30 This is Larry Liptak’s story: “Daddy, I can’t raise my left arm.” Those words sent us on an eight-month odyssey to orthopedic doctors and neurologists looking for the cause of the mysterious malady. Dani was poked, prodded, X-rayed, and EMGed…
Photo courtesy of Johanna Murrell Day 3 of 30 This is Johanna Murrell’s story: My name is Johanna Murrell, and I’m a physical therapist. My major area of expertise is geriatrics and Parkinson’s disease, but I recently had the pleasure of working with someone who has…
Photo courtesy of Matt DeEmilio Day 2 of 30 This is Matt DeEmilio’s story: My name is Matt DeEmilio. I’m 27 years old, and I am the coordinator for disability support services at Coastal Carolina Community College in North Carolina. My job entails granting reasonable accommodations for equal access,…
Photo courtesy of Ross Hovey Day 1 of 30 This is Ross Hovey’s (@thesmartchap_rosshovey) story: Would I have preferred a life without disability? The simple answer to this question is “Yes.” But do I grudge having spinal muscular atrophy? Not really, as I don’t know anything different. I think…
Recent Posts
- I rarely answer honestly when asked, ‘How are the boys doing?’
- Trial testing gene-editing therapy PBGENE-DMD gets FDA green light
- A winter blizzard had me cooped up at home for days
- New Phase 3 trial of Duchenne gene therapy SGT-003 to begin dosing
- The rule of 10 helps me navigate bad days with LGMD