When Mom Is Tired, Caregiving Is Hard

I saw a meme today that said, “I need a day between every day to recover from the day before and prepare for the upcoming day.” I could not have identified with anything more today. If you haven’t guessed it yet, I am exhausted. I was a single caregiver and…

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…

Benitec Biopharma is taking steps to get the needed regulatory clearances to start clinical testing in Europe and the U.S. of BB-301, its experimental gene therapy for oculopharyngeal muscular dystrophy or OPMD, a type of the genetic disease that typically first affects the eyelids and the throat. The…

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…

A team of researchers received a $3-million grant from the Chan Zuckerberg Initiative to create a comprehensive blueprint of healthy skeletal muscle cells — whose dysfunction is associated with several rare muscle diseases, such as muscle dystrophy — as children grow. Muscular dystrophy comprises a group of more…

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…