Celebrating our 20th wedding anniversary is bittersweet with ALS

While many couples celebrating an anniversary post joyous messages and proclaim their excitement about the future on social media, I couldn’t bring myself to do the same when my husband, Todd, and I reached our 20th wedding anniversary a couple weeks ago. It’s not because we don’t have a good…

Treatment with regulatory T-cells (Tregs), a type of anti-inflammatory immune cell, reduced biomarker levels of inflammation and oxidative stress in people with amyotrophic lateral sclerosis (ALS), a study shows. The experimental approach may help curb these contributions to nerve cell damage in ALS, the findings suggest, and routinely…

When the TDP-43 protein is less able to form two-protein complexes called dimers, it appears to be more likely to form the toxic clumps seen in amyotrophic lateral sclerosis (ALS), a study reports. As these clumps are found in about 97% of all ALS cases, a better understanding of the…

Living with ALS can be an emotional roller coaster. However, I’ve found that when I round the bend and find humor in a situation, I’m sure to have a smooth ride ahead. Let me share my latest experience with you. Before ALS, my life was filled with moving.

Note: This story was updated Sept. 25, 2023, to correct that TW001 uses the same active ingredient as Radicava and Radicava ORS but is a different therapy. Treeway has chosen Specialised Therapeutics Asia, known as ST, as its partner to market TW001, an oral formulation of edaravone, for…

Have you ever tried to assemble something or repair something only to finally give up and seek help? Such episodes were among my greatest frustrations before I was stricken with ALS. In retrospect, they feel like mere child’s play when compared with what I go through now. As a…

Mutations in the C9ORF7 gene, the most common genetic cause of amyotrophic lateral sclerosis (ALS), lead to defects in the stem cells needed for brain development in the early stages of life, a new study shows. In animal models of the disease, this resulted in smaller than normal volumes…

We had a young visitor this past weekend who met my husband’s disability with frank curiosity and innocent sweetness. The guest, Todd’s 6-year-old great-nephew, watched with interest as I set up his Uncle Todd at the computer. “What is that for?” he asked as I put Todd’s sip-and-puff…

Treatment with CNM-Au8 was found to significantly delay disease progression and prolong survival, by more than 1.5 years, among adults with early-stage amyotrophic lateral sclerosis (ALS) in the RESCUE-ALS trial and its open-label extension phase. That’s according to two different statistical analyses, which overall showed that patients who…

A new two-year, $400,000 grant will support studies — by EverythingALS and the Sean M. Healey and AMG Center for ALS at Massachusetts General Hospital (MGH) — aimed at identifying early digital diagnostic markers in amyotrophic lateral sclerosis (ALS). The award, from ALS Finding a Cure…