Alexion Charitable Foundation Giving $1.1M to Assist Rare Disease Community During Pandemic

ALS Support Groups Are Going Online

Last week, I joined about 20 other ALS patients in attending an online meeting on Zoom. While the speaker scrolled through her slide program, I thought, “Wow, no parking lots! We’re all here and no one had to deal with a parking lot!” Maybe I should explain my negative association…

NIH Earmarks $25M for Five-year Program Promoting ALS Research

The National Institutes of Health (NIH) is investing $25 million over five years in a program to encourage innovative research that deepens our understanding of  amyotrophic lateral sclerosis (ALS), with a goal of better treating the disease. Called Accelerating Leading-edge Science in ALS (ALS2), the initiative aims at…

Hanging Up the Keys and Other Tough Decisions

I thought my husband, Todd, should quit driving long before he was ready to hang up the keys. When ALS had weakened his left arm and right hand, he would get gas from a full-service station. I questioned whether he should be driving when he couldn’t pump gas for himself.

‘What’s Love Got to Do With It?’

“Without your love, I’d be nowhere at all. I’d be lost if not for you.” The inspiration for that Bob Dylan song is a mystery to the general public. However, the lyrics come close to capturing my indebtedness to…

Global Day 2020 Calls Attention to ALS and Need for Better Care

Each June 21 marks Global Day 2020, 24 hours set aside to heighten awareness of amyotrophic lateral sclerosis (ALS) and to raise money to fight it. Ample ways exist to participate in the worldwide event that’s coordinated by the International Alliance of ALS/MND Associations, whose member organizations…

Researchers Identify New Genetic Defect Linked to ALS

Mutations in the UBQLN2 gene, known to cause amyotrophic lateral sclerosis (ALS), promote the buildup of toxic waste in brain cells by preventing the normal function of two cellular degradation mechanisms, a study has found. In addition to its known role in the proteasome, a mechanism used…