Amydis has received a $2.5 million grant from the National Institutes of Health (NIH) to develop a simple eye test that could help detect toxic deposits of the TDP-43 protein — a hallmark of amyotrophic lateral sclerosis (ALS) and several other neurodegenerative diseases. With the funding from the…
Grant funds new ALS treatment approach targeting TDP-43 pathway
In 2021, I participated in a Zoom meeting about ALS community engagement. My husband, Jeff, had passed away from the disease a year earlier, but I have remained involved in advocacy. It was during the meeting that I met a compelling young woman named Leah Stavenhagen. Then in her late…
Keros Therapeutics is collaborating with Massachusetts General Hospital to design a clinical trial evaluating its therapy candidate rinvatercept in people with amyotrophic lateral sclerosis (ALS). According to the developer, the therapy may help preserve muscle strength and function, and improve quality of life, for those with the progressive…
The outside temperature was cold, just 15 F, but the sun was shining, so I decided to forgo my elliptical machine and instead walk down our country road. I checked on my husband, Todd, to make sure it was OK to leave, and then slid into my snow pants and…
Insmed has launched a first-in-human clinical trial evaluating its experimental gene therapy INS1202 in people with amyotrophic lateral sclerosis (ALS). The Phase 1 study, called ARMOR (NCT07290062), aims to enroll about 23 adults with ALS, ages 18 to 80, who have been living with the disease for…
I was recently asked: “If you could reduce uncertainty in one area of your life with ALS, which would it be?” I took a few moments to think, then blurted out: “Keep my current symptoms exactly as they are. No more changes, no more surprises.” What? No wanting…
At this year’s Muscular Dystrophy Association (MDA) Clinical & Scientific Conference, researchers and clinicians are talking about the central role of patients, families, and caregivers in driving change for people living with neuromuscular diseases. Bionews, the parent company of this site, sat down with John F. Crowley, president and…
An experimental nerve-protecting therapy called RT1999 (smilagenin) will soon be tested in people with amyotrophic lateral sclerosis (ALS) as part of a U.K. platform trial designed to quickly screen potential ALS treatments. The study, called EXPERTS-ALS, is testing several experimental ALS therapies…
Making ALS Advocacy My Purpose
Chris was diagnosed with ALS in 2024. Before that, he spent 40 years in the oil and gas industry, working and living in eight countries across five continents. He’s dedicated himself to helping others with ALS move forward. This content is sponsored by Tanabe Pharma America, Inc. (TPA) and is…
Recent Posts
- Grant funds new ALS treatment approach targeting TDP-43 pathway
- Amydis awarded $2.5M to develop diagnostic eye test for ALS
- Mourning the loss of a leader, friend, and advocate for women with ALS
- Developer to test ALS therapy with help of Mass General’s MyMatch
- A story of a family’s loss offers guidance amid my grief with ALS