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…
MDA Wants Neuromuscular Disease Patients to Have Early Access to COVID-19 Vaccine
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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.
New research into the motor networks of polio survivors shows the brain may “rewire” itself in neurological diseases, leading to a reorganization that also may serve as a potential biomarker of amyotrophic lateral sclerosis (ALS) and other motor neuron disorders, a study reports. Published in…
A first set of Canadian guidelines for the care of people with amyotrophic lateral sclerosis (ALS) have been published, emphasizing the need for a holistic and patient-centered approach, with attention to emotional well-being. The guidelines, reported to include comprehensive and easy-to-reference best practice…
The first wave of COVID-19 in Europe severely disrupted access to care and raised stress and anxiety in people with rare diseases, negatively affecting their health and well-being, according to a survey conducted by Eurordis-Rare Diseases Europe. “People living with rare diseases in Europe have found themselves caught as collateral…
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