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…
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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,…
“Ride a painted pony, Let the spinnin’ wheel spin.” Recently, I had a flashback to those lyrics by David Clayton-Thomas and recorded by the band Blood, Sweat & Tears. They speak to me on many levels. The…
With a new version of a low-cost eye-tracking system called EyeWriter, artists and others who are paralyzed due to amyotrophic lateral sclerosis (ALS) can more accurately draw and create images using only their eyes. The latest EyeWriter 2.0 software improves the system’s accuracy and now also allows the…
BrainStorm Cell Therapeutics met with U.S. Food and Drug Administration (FDA) officials regarding its plans for a semi-automatic manufacturing process for NurOwn, the company’s investigational cell-based therapy for amyotrophic lateral sclerosis (ALS). Discussion at the meeting — formally called a type C meeting — covered issues that…
Scores of virtual events are afoot around the world to mark Rare Disease Day 2021 on Feb. 28. The activities are focused on heightening awareness about rare diseases and the hundreds of millions of individuals they are thought to affect. Patients, caregivers, and advocates worldwide will sport denim ribbons…
Pridopidine is an investigational sigma-1 receptor agonist for the treatment of amyotrophic lateral sclerosis (ALS). Teva Pharmaceuticals was originally developing the treatment — which exhibits potential neuroprotective effects with a favorable safety profile — but Prilenia Therapeutics has since acquired the rights to further develop it. How…
I’m often asked by others in the ALS community for tips and insight from my past 10 years of living with ALS. While I am grateful for both making it this far while maintaining most of my physical abilities, I am by no means an expert. ALS symptoms differ…