The Foundation for the National Institutes of Health (FNIH) is launching a public-private partnership to generate the largest openly available data platform in amyotrophic lateral sclerosis (ALS) research, with the goal of accelerating the diagnosis and treatment of the progressive neurodegenerative disease. This five-year initiative will be conducted through…
New US public-private partnership aims to accelerate ALS research
The Les Turner ALS Foundation, in an effort to boost and diversify clinical trial participation, has written a step-by-step guide to inform people on why clinical research in amyotrophic lateral sclerosis (ALS) needs a diverse pool of participants, how to join clinical research, and what to expect when…
From the moment I wake up to when I finish breakfast, I do things in the same order as I’ve been doing them for the past 10 years. That’s because my secret dream is to be calm, relaxed, and easygoing each day. But the steady flood of life’s curveballs,…
The fourth annual Major League Baseball (MLB) Lou Gehrig Day takes place on June 2, a date set aside to pay tribute to the legendary New York Yankees first baseman whose career was halted by amyotrophic lateral sclerosis (ALS). The Muscular Dystrophy Association (MDA) will again play…
A new documentary about I AM ALS and the “revolutionary movement” begun by the organization’s founders — which will stream globally on May 28 — is seeking to advance awareness of amyotrophic lateral sclerosis (ALS) and other neurodegenerative disorders while inspiring others to fight for change. Called “For…
As I read my daily emails and text messages, I think of my condition and what ALS Awareness Month means to me. How does it make me feel? What can I do to enhance the effects of this special month? Like the Ice Bucket Challenge, what is its…
Nature calms me and nourishes my soul amid the challenges of giving care to my husband, Todd, who has ALS. A few days ago, I walked down our country road, listening to singing birds and taking in spring’s beauty. I admired signs of new life — budding green leaves…
People with amyotrophic lateral sclerosis (ALS) who continued treatment with NurOwn (debamestrocel) after completing a Phase 3 trial experienced additional benefits with extended treatment, data show. The findings come from 10 adults who received up to six additional doses of NurOwn over nearly one year in an expanded…
By taking advantage of a molecular interaction between the disease-related protein TDP-43 and another, innocuous protein, scientists have found a novel strategy that potentially may be used as a treatment for amyotrophic lateral sclerosis (ALS). “Importantly, this interaction could be key to unlocking a treatment not just for ALS…
An old adage says, “Do something today that your future self will thank you for.” Well, I’m in that future now, so today, I’m sending my past self a basket full of thanks. Why? Because every time I walk into our bathroom, I’m grateful. And I believe the modifications my…
Recent Posts
- ALS partnership to give 6 patients expanded access to TRE-515
- Frustration mounts when ALS assistive technology isn’t so helpful
- Trial of experimental ALS therapy pridopidine enrolls first participant
- Advocate for ALS patients, including herself, recognized for work
- New book shares personal stories and insights from people living with ALS