People with amyotrophic lateral sclerosis (ALS) and other motor neuron diseases (MNDs), as well as their caregivers and healthcare professionals, are being recruited across the U.K. to provide input for the development of a web-based tool to help patients decide if they want a feeding tube. Patients are being…
Patients, Caregivers in UK to Help Design Tool for Feeding Tube Decisions
Boston Children’s Hospital (BCH) is renaming its amyotrophic lateral sclerosis (ALS) Augmentative Communication Program to the Jay S. Fishman ALS-Augmentative Communication Program at Boston Children’s, the hospital announced. Fishman was CEO of the American insurance firm Travelers Companies. A vocal…
Caring for a loved one with a rare disease, especially during these uncertain times, demands significant time, attention, patience, and dedication. To help meet that need, the National Organization for Rare Disorders (NORD)’s Rare Caregiver Respite Program may be a helpful resource. The program seeks to give a…
My mind can easily spiral into anxiety if I let it. I got selected for jury duty. Along with my request to be excused because I’m my husband’s caregiver, I included doctors’ notes stating that my husband, Todd, is paralyzed. Apparently, that wasn’t enough, because I received a second round…
Indiana motorists can now sport a specialty license plate on their vehicles to show their support for amyotrophic lateral sclerosis (ALS), while contributing to the work into this neurodegenerative disease underway at the ALS Therapy Development Institute (ALS TDI). Proceeds from plate purchases will go to support studies taking place at…
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The Devil Is in the Details
“Pleased to meet you, hope you guess my name.” — Keith Richards and Mick Jagger, “Sympathy for the Devil” Last week, I experienced an abysmal customer service episode. Lasting the better part of a full workday, the bitter crescendo left…
The two COVID-19 vaccines that recently received emergency approval from the U.S. and other worldwide regulatory agencies are expected to pose little risk to the rare disease community, including to patients with compromised immune systems or those participating in gene therapy studies. That was the message of a recent…
Lately, I’ve seen an escalation of messages urging me to protect myself from hackers, scammers, and other potential identity thieves. But there’s one identity thief that’s always on my radar: my ALS. That’s because the ongoing symptoms of ALS challenge the very essence of my sense of self. I’ve managed…
Mitsubishi Tanabe Pharma America announced changes to enhance its out-of-pocket assistance program for people with amyotrophic lateral sclerosis (ALS) using Radicava (edaravone). The changes, aimed at making the program easier and more accessible, include a new “hybrid” card meant to help patients obtain appropriate pharmacy and medical co-pay…
To mark what would have been the 79th birthday of the theoretical physicist Stephen Hawking, who lived with amyotrophic lateral sclerosis (ALS) for 55 years, Answer ALS is providing researchers with free access to the world’s largest ALS data portal. To help spread the word, the organization…
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