One of the first symptoms of ALS I experienced was a sudden weakness in my legs and feet. This meant that without warning, whenever I walked I felt as if I had stepped in a hole, and more than once I ended up taking a nasty fall. Even when I…
Rebuilding My Confidence and Avoiding Life’s Banana Peels
Actimed Therapeutics has obtained the rights to develop and commercialize ACM-002 (S-oxprenolol) for the treatment of amyotrophic lateral sclerosis (ALS) in Europe, the company announced. The rights, licensed from patent owner Charité University Medicine Berlin, cover all major European markets, including France, Germany, the U.K., Italy,…
The U.S. Senate has passed a bill that may make it easier for people with amyotrophic lateral sclerosis (ALS) to access disability benefits. The proposed legislation, the ALS Disability Insurance Access Act of 2019, still must be approved by the U.S. House of Representatives. If enacted, the legislation…
The Muscular Dystrophy Association (MDA) is encouraging the U.S. Centers for Disease Control and Prevention (CDC) to recommend that people living with neuromuscular diseases (NMDs) have early access to any federally approved COVID-19 vaccine. The MDA made its request in a letter to members of the…
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A Physical Presence in Our Lives
On Saturday morning, I lay cuddled next to my husband, Todd, in bed. I could feel his thigh muscles pulse against my leg, misfire after misfire. I wished I could will the fasciculations to stop. When I washed him and changed his shorts, I was struck by how thin his…
Canadian authorities have approved Xeomin (incobotulinumtoxinA) for the treatment of chronic sialorrhea, or excessive drooling, associated with neurological diseases such as amyotrophic lateral sclerosis (ALS). The decision makes Xeomin the first and only neurotoxin for chronic sialorrhea licensed for this indication in Canada. The therapy was…
“Well I don’t know how to tell the weight of the sun, … How the home computer has me on the run, … Of all the Nobel prizes that I’ve never won, … Please be upstanding for the Mayor of…
To empower and equip members of the rare disease community to engage state leaders in matters of importance to patients and their families, the National Organization for Rare Disorders (NORD) has launched an initiative across the U.S. Its goal is to establish a Rare Disease Advisory Council (RDAC)…
Two amyotrophic lateral sclerosis (ALS) staging systems — the King’s and the Milano-Torino’s, known as MiToS — may effectively assess changes in patients’ clinical progression and treatment responses, a study suggests. The data also supported the previously reported complementary nature of these two systems, showing that the…
During these final weeks of 2020, I’ve been reflecting on the various ways this world health crisis has affected the ALS community. One evolving activity that has held my interest ever since I included it in my post-pandemic predictions in a column last April is online ALS support groups.
Recent Posts
- A dream takes me back to a time before life with ALS
- ALS ONE joining ALS Network to strengthen research, services
- Rollator revamp needed because design matters for living well with ALS
- Study probes high ALS risk in elite athletes and other ‘champions’
- First ALS patient dosed in study of experimental gene therapy VTx-002