All around me, I’ve been noticing how people, businesses, and organizations are pivoting to survive these challenging times. We’re getting confident using Zoom, dine-in restaurants have expanded their takeout business, and ALS fundraisers are holding online events. I love seeing all this successful pivoting. It gives me hope. Pivoting,…
Learning to Pivot When Living With ALS
Younger cycad seeds can contain more toxins than older seeds, and their widespread consumption by people on occupied Guam during World War II could be the environmental origin of the rare sporadic amyotrophic lateral sclerosis (ALS) cluster found there, according to a recent study. Guam residents emerged from their wartime…
A Phase 1 clinical trial of a gene-based therapy for amyotrophic lateral sclerosis (ALS) is now recruiting patients in one of its European centers. The Clinical Research Facility at St James’s Hospital Dublin, in Ireland, has enrolled its first patient and is one of four European centers to participate…
Amylyx’s experimental oral treatment AMX0035 safely and effectively slows functional decline in amyotrophic lateral sclerosis (ALS) patients with rapidly progressing disease, according to full data from the CENTAUR Phase 2/3 trial. Only changes in upper limb strength were significantly different from those seen in placebo-treated patients, the data show. Meanwhile,…
My husband, Todd, and I celebrated our 17th wedding anniversary in late August with a date at Fitzgerald’s, a restaurant built on the shore of Lake Superior in Eagle River, Michigan. A permit to build on a beach would never be approved today, but it could be done in…
The Phase 3 clinical trial testing an oral suspension formulation of edaravone for amyotrophic lateral sclerosis (ALS) has resumed dosing and patient recruitment, its developer, Mitsubishi Tanabe Pharma America (MTPA), announced. The trial (NCT04165824) was launched in November, but was paused in March due to the COVID-19 pandemic. The study,…
Same But Different, a U.K. nonprofit that uses the arts to bring communities together, is holding a calendar photography competition to raise awareness for rare diseases. Under the theme “A Glimmer of Hope,” the competition is a means to “visually express the hope that exists for people affected by…
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Going With My Gut
Looking forward to getting a flu shot is something I never thought possible. But at this point in what has been a very strange year, it’s a darned good excuse to get out and do something. In past years, I followed health guidelines and always waited until early October…
Mutations in the gene C9orf72, a common genetic cause of amyotrophic lateral sclerosis (ALS), cause immune cells to have an abnormally potent inflammatory response when certain receptors are are activated, a new study suggests. The findings could explain why people with ALS are more likely to develop some autoimmune…
The European Commission has granted orphan drug designation to ILB, Tikomed‘s investigational treatment for amyotrophic lateral sclerosis (ALS). In the EU, this designation is based on a positive opinion issued by the Committee for Orphan Medicinal Products (COMP), a part of the European…
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- New funding backs commercial readiness efforts for ALS therapy