Last week for me, the letters A-L-S stood for “A Lot of Socks.” I tackled a project that would make living with amyotrophic lateral sclerosis easier for me right now, for my future self, gave me peace of mind, and yes, it involved socks. It all began when I was…
Using a new laboratory model of brain cells, researchers demonstrated that cells with mutations associated with amyotrophic lateral sclerosis (ALS) show early signs of DNA damage and other forms of cellular stress. Results suggest that blocking these cellular stress processes may hold promise in treating ALS. The study, “…
A Phase 2 study of the investigational antibody AT-1501 in treating amyotrophic lateral sclerosis (ALS) has completed patient enrollment in three of its four dosing groups, and is likely to be fully enrolled by year’s end, its developer, Eledon Pharmaceuticals, announced. A total of 54 ALS patients diagnosed in the…
New early clinical study results support the potential of GN-K01, an investigational antibody being developed by GeNeuro, as a treatment for amyotrophic lateral sclerosis (ALS). The therapy may enter clinical trials as early as 2022, according to the company. The antibody targets a viral protein, called HERV-K ENV,…
Global Genes has partnered with the Rare Disease Diversity Coalition (RDDC) to advance health equity for rare disease patients and caregivers in underrepresented communities of color. “For rare disease patients, there are many challenges — and for people of color with a rare disease, these challenges are compounded…
Eighteen years ago, Todd and I joined our lives in marriage, vowing for better or worse, in sickness and in health, and we went forward together as friends and allies. Jesus taught that joining in marriage is “two becoming one flesh.” Indeed, I felt oneness with Todd. We liked…
A detailed atlas of the various types of cells that populate the motor cortex, the brain region that controls voluntary movement and is damaged in people with amyotrophic lateral sclerosis (ALS), was created by a worldwide consortium of researchers. The long-term goal of the group, which involves hundreds of…
“You say you got a real solution, Well, you know, We’d all love to see the plan. You ask me for a contribution, Well, you know, We’re all doing what we can.” John Lennon’s lyrics from the song “Revolution” by the Beatles capture some of my concerns regarding the…
Tofersen, an experimental treatment for amyotrophic lateral sclerosis (ALS) patients with mutations in the SOD1 gene, failed to significantly slow the rate of disease progression relative to a placebo in a Phase 3 trial. These top-line findings mean that the VALOR study (NCT02623699), which is testing tofersen in…
Like most folks who live with ALS, I tend to get stuck in the shortsighted day-to-day management of my symptoms. Over the years, I’ve developed several strategies that help me change my mental focus from a short view to a longer one in which I’m open to the possibilities of…
