Stanley H. Appel, a world-renowned expert in amyotrophic lateral sclerosis (ALS) and the founder of the first multidisciplinary clinic dedicated to ALS care and research in the U.S., will receive the Tribute Award from the Muscular Dystrophy Association (MDA). The award acknowledges the neurologist’s work in pioneering ALS…
World-renowned ALS Researcher, Clinician to Receive MDA Award
Last week, my husband, Todd, considered canceling a dentist appointment to get a crown placed over a broken tooth. “Is it really necessary?” he asked. “What’s left of this tooth will probably last me for the rest of my life.” Todd has had ALS for nearly 12 years, far exceeding…
The rarity of amyotrophic lateral sclerosis (ALS) in children makes it impossible to realistically conduct clinical trials of experimental medicines in this population, researchers across Europe argue in a paper. “Given the absence of consensus on pediatric ALS as a disease entity, the extremely low prevalence of ALS in…
“What’s the buzz? Tell me what’s a-happening, Why should you want to know? Don’t you mind about the future? Don’t you try to think ahead? Save tomorrow for tomorrow, Think about today instead.” — Andrew Lloyd Webber and Tim Rice, “What’s the Buzz,” from the rock opera “Jesus Christ…
After a two-year hiatus, the Muscular Dystrophy Association (MDA) is bringing back its in-person Wings Over Wall Street fundraiser gala in New York City, with proceeds going to support MDA research into promising amyotrophic lateral sclerosis (ALS) treatments. The June 9 event, starting at 6 p.m. EST at…
I use many strategies to keep myself engaged in life and avoid getting pulled down mentally by my ALS. Being a “go-along” is one of those strategies, and it’s a perfect partner to showing up. But being a go-along — that is, accompanying my husband on his various errands…
The Barrow Neurological Institute in Phoenix, Arizona, is calling on people with amyotrophic lateral sclerosis (ALS) and their family members and friends to participate in a biomarker study that aims to create a bank of biological samples and clinical data collected over time. Data will be made available…
One-time delivery of a CRISPR-based gene therapy significantly reduced the buildup of toxic RNA molecules resulting from C9ORF72 mutations in cells and mouse models of amyotrophic lateral sclerosis (ALS), the therapy’s developer, Locanabio, reported. The approach was designed using the company’s CORRECTx platform, which uses CRISPR technology to…
After several years of support, the late-stage biopharmaceutical company Cytokinetics is reaffirming its commitment to the ALS Association and its efforts to battle amyotrophic lateral sclerosis (ALS) and assist the ALS community. In addition to backing nationwide organizational efforts, Cytokinetics has, for more than a decade, provided support…
A couple weeks ago, when my husband, Todd, told me he wasn’t going to attend our kids’ end-of-the-year events at school — including our son’s band concert and our daughter’s choir concert and dance recital — it was a reality check for me about where we are in this ALS…
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