We Are All the Stuff of Legends
“All the world’s a stage, And all the men and women merely players; They have their exits and their entrances; And one man in his time plays many parts …” – William Shakespeare Some months back, I…
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IPL344
IPL344 is an experimental treatment for amyotrophic lateral sclerosis (ALS) that is being developed by Immunity Pharma to slow disease progression. How does IPL344 work? ALS is a progressive disease of the nervous system characterized by the death of motor neurons — nerve cells that control voluntary muscles. The…
Rebuilding My Confidence and Avoiding Life’s Banana Peels
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…
MDA Wants Neuromuscular Disease Patients to Have Early Access to COVID-19 Vaccine
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…
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…
Stumbling Upon the Sublime in a Minefield of the Ridiculous
“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…
NORD Push for Rare Disease Advisory Councils Focus of Dec. 16 Public Meeting
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)…
Zooming Past My Previous Predictions
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.
Survey Finds COVID-19 Disrupted Care, Well-being of Rare Disease Patients in Europe
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…
Giving Thanks With 2020 Vision
“I am a rock, I am an island, And a rock feels no pain.” In 2020, there have been none of Paul Simon’s “rocks” to be found in the social circles that I inhabit. Everyone that I…