A conference in July will feature “diverse perspectives,” including patient presentations and discussions featuring people living with amyotrophic lateral sclerosis (ALS) along with clinical and research experts. That’s according to the ALS Association, which said its inaugural ALS Nexus Conference will be held July 14-17 at the Gaylord Texan Resort &…
I recently came across a CNN opinion piece by writer s.e. smith titled “Jokes about disability aren’t taboo. But here’s who shouldn’t be telling them.” I read on, because my husband and I often use humor to deal with the difficulty of life with ALS, as Todd…
A biomarker test that identifies abnormal protein fragments called cryptic peptides may help detect amyotrophic lateral sclerosis (ALS) and frontotemporal dementia (FTD) in the early stages, a study found. Cryptic peptides from the HDGFL2 protein were elevated in fluid samples from people with ALS/FTD, including in those who had…
The ALS Association is partnering with MyTomorrows, a global health technology company, to make it easier for people with amyotrophic lateral sclerosis (ALS) to find and participate in clinical trials, and to know about “pre-approval treatment options,” the company said in a press release. The collaboration…
Health Canada is now reviewing Qalsody (tofersen) as a potential treatment for people with amyotrophic lateral sclerosis (ALS) who carry mutations in the SOD1 gene, according to the therapy’s developer Biogen. The Canadian regulatory authority agreed to review Biogen’s application for the therapy’s approval, with its decision expected in early 2025, according to…
EverythingALS has introduced a platform aimed at advancing amyotrophic lateral sclerosis (ALS) research using artificial intelligence (AI) and machine learning — with the ultimate goal of eradicating the disease and restoring lost motor function to those with ALS and other neurodegenerative disorders. The collaborative and technology-enabled platform, dubbed…
Even before my late husband, Jeff, was diagnosed with ALS in 2018, we approached his unusual and alarming symptoms as a team. He’d shared with me from the beginning his painless but mysterious foot drop, and together our concerns grew when he began to slur his speech. From…
While living with ALS, I have days when I’m low in spirit and need something to lift me out of the doldrums. When this happens, two things help me: a visit from my daughter and some great music. Recently, I got both at the same time. What a…
When investigational amyotrophic lateral sclerosis (ALS) therapy CNM-Au8 reaches the bloodstream, it attracts a layer of proteins called a corona to its surface that help it more easily reach the brain and last longer in circulation, according to recent research. Developer Clene Nanomedicine says the findings are consistent…
“I’ve noticed a decline in my mental health this week,” my husband, Todd, observed after a week of being quarantined in his office. Our daughter had a bad cold, and Todd hoped to avoid the bug that would have threatened his life. He rarely leaves our home, anyhow, but…
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