The Muscular Dystrophy Association (MDA) has rolled out its St. Patrick’s Day fundraising campaign, MDA Shamrocks — the largest such campaign in the U.S. marking this day — to raise money for research, patient care, and advocacy for amyotrophic lateral sclerosis (ALS) and other rare neuromuscular…
The ALS Association’s Walk to Defeat ALS fundraising event this year is marking 25 years of bringing together people with amyotrophic lateral sclerosis (ALS) and their families to offer support and raise funds for advancing research and improving care for those living with the disease. With a total…
The ALS Association has launched a free resource to help people with amyotrophic lateral sclerosis (ALS) and their families navigate health insurance denials and appeals — with the tool’s goal to help patients get coverage for critical care. Dubbed the ALS Insurance Navigator, the tool delivers detailed…
Four experimental treatments for amyotrophic lateral sclerosis (ALS) have been tested in the HEALEY ALS platform trial and two, CNM-Au8 and pridopidine, have shown promising results and are moving toward Phase 3 testing. The others, zilucoplan and verdiperstat, failed to show any benefit and are no…
It’s been a rough couple weeks since my husband, Todd, came down with a respiratory illness. The first weekend was the worst, with nausea, fever, chills, body aches, and chest congestion. By day four, he was able to eat a bit, and he spent longer stretches of the day…
Sleep problems may become evident in people with amyotrophic lateral sclerosis (ALS) several years before the characteristic motor symptoms of the disease develop, a new study shows. The study suggests alterations in a brain region called the hypothalamus, which are seen in early disease stages and sometimes even…
Voyager Therapeutics will reassess its gene therapy program for amyotrophic lateral sclerosis (ALS) associated with mutations in the SOD1 gene after its original candidate, VY9323, was found to have toxic effects in nonhuman primate studies. The company believes the problem lies with the therapy’s payload and not the viral carrier…
The ALS Association, a U.S.-based nonprofit whose mission is to help find a cure for amyotrophic lateral sclerosis (ALS), has issued a statement strongly opposing plans for cuts in National Institutes of Health (NIH) funding, saying any such reductions would obstruct progress in ALS research. The organization also…
Having access to results from prognostic tests — including neurofilament light chain (NfL) and the ALS Functional Rating Scale-Revised (ALSFRS-R) — is informational, personally relevant, and relevant to research for people with amyotrophic lateral sclerosis (ALS), a study suggests. The perceived burden related to receiving the tests results was…
A photo I came across this week from when my late husband, Jeff, was living with ALS flooded me with emotions. It was taken in November 2019, the month we moved into an accessible home. His ALS was advancing rapidly at the time, which prompted our move. He could…
