“There’s an old joke, um … two elderly women are at a Catskill mountain resort, and one of ’em says, ‘Boy, the food at this place is really terrible.’ The other one says, ‘Yeah, I know — and such small portions.’ Well, that’s essentially how I feel about…
Like It or Not, My Steak Is Rare
Rare Disease Day at NIH, organized by the National Institutes of Health (NIH) and taking place on March 1, will feature panel discussions, patient stories, research updates, TED-style talks, and a presentation by a Nobel laureate recently recognized for her work on a gene editing tool. The free, virtual…
Existing safety and effectiveness data from a Phase 3 clinical trial of NurOwn — an investigational cell-based therapy for amyotrophic lateral sclerosis (ALS) — are not sufficient to support the therapy’s approval, the U.S. Food and Drug Administration (FDA) concluded in an initial review. According to the…
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Lessons I Learned From My AFOs
I’m happy to announce I’ve finally resolved a love-hate relationship — with my AFOs. It took persistence, but I can now step into my white, molded plastic ankle-foot orthoses and walk pain-free. That’s important to me because I want to keep walking for as long as possible, and my…
The My Name’5 Doddie Foundation has donated a total of £300,000 (about $420,600) to two U.K. nonprofits to support people living with motor neuron diseases (MND), including amyotrophic lateral sclerosis (ALS). The foundation, established by the former Scottish rugby player George Wilson “Doddie” Weir, gave £200,000 to the…
Military veterans with amyotrophic lateral sclerosis (ALS) are nearly four times as likely to commit suicide as vets without the progressive neurological disease, according to a recent study. This finding suggests that the Veterans Health Administration (VHA) should increase their suicide prevention efforts among veterans with ALS. The study, “…
Moderate physical activity may slow muscle deterioration associated with the progression of amyotrophic lateral sclerosis (ALS), improving patients’ ability to perform daily life activities, a review study has found. This type of therapeutic exercise also slowed lung function decline, but did not prolong survival, suggesting this form of physical…
It’s been an intense couple weeks of winter weather on Michigan’s Keweenaw Peninsula. After a mild January with many sunny days, the first two weeks of February made up for it with over 40 inches of snowfall, along with below-zero to single-digit temperatures. I had been getting out…
People with rare disorders have a worse healthcare experience than those affected by chronic diseases, according to the results of an international survey conducted by Eurordis-Rare Diseases Europe. Indeed, rare disease patients overall give their healthcare experience a medium-low rating, of 2.5 on a scale of 1 to 5,…
The McQuade Center for Strategic Research and Development (MSRD) and Eikonizo Therapeutics have entered a collaboration to advance potential therapies for rare diseases, including amyotrophic lateral sclerosis (ALS). “We are dedicated to seeking out and supporting novel treatments for complex and rare diseases,” Robert McQuade, PhD, president of MSRD…
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