On Thursday, Nov. 17, I went to bed with what I thought was a bad stomachache. It felt like someone was sticking a knife in my left flank. Then I realized: This was undoubtedly a kidney stone. I’d had three others, and the pain was exactly the same. But this…
Are there curbs or cutouts? How many stairs are there? Is there an elevator? Is there space for multiple power chairs? How big is the bathroom? How far is the parking lot from the entrance? What do all of these concerns have in common? Unfortunately, they’re things I never…
CITGO raised $2.3 million this year to help advance research, improve patient care, and bolster advocacy efforts for the neuromuscular community, continuing its long-standing support for the Muscular Dystrophy Association (MDA), . Throughout the year, employees of the Houston, Texas-based petroleum company, along with vendors, contractors, marketers,…
The U.S. Food and Drug Administration (FDA) has given priority review Sarepta Therapeutics‘ application seeking accelerated approval of SRP-9001 (delandistrogene moxeparvovec), the company’s experimental gene therapy for Duchenne muscular dystrophy (DMD) in patients who can walk. An FDA decision is expected on or before May 29, 2023. “We are delighted…
Like many, we have a tradition of buying a real Christmas tree every year during the weekend after Thanksgiving. It just doesn’t feel like Christmas until we have visited our local tree farm to pick out the perfect one. I love everything about that day — the damp pine…
On Nov. 10, I delivered my second poem, “Breaking the Fourth Wall,” at an engagement by ART:DIS, the first organization in Singapore to pioneer the artistic development of members of the disabled community. The goal of ART:DIS is to unearth the creative talents and diverse gifts of disabled Singaporeans…
Blocking a calcium channel called TRPC6 prolonged survival in a mouse model of Duchenne muscular dystrophy (DMD) by improving skeletal and heart muscle function and reducing bone deformities, a study showed. Its results support clinical trials of TRPC6 inhibitors in Duchenne patients as “a novel DMD therapy,” the researchers wrote,…
Adult life is overwhelming. There’s so much to do. You have to hold down a job, pay rent or mortgage, prepare for retirement, spend quality time with those you love, learn new skills, find time for rest, and pursue a hobby or passion. Then add Duchenne muscular dystrophy on…
While I love Christmas, I’m a Thanksgiving girl, too. Decorating for Christmas is one of my favorite things ever. I usually go shopping for vintage Christmas decorations and get at least one tree up before Thanksgiving. But I won’t get serious until we put the last leftovers from our turkey…
Analyzing the type of mutation in the DMD gene combined with assessing motor milestones may help better distinguish Duchenne muscular dystrophy (DMD) from Becker muscular dystrophy (BMD) early in life, a study found. Combining both approaches had better predictive power than using either alone, and could mean that children will…
Get regular updates to your inbox.