Cue the heroic Olympic theme song, our competitor is ready to begin! As the timekeeper signals all onlookers to be silent, the athlete draws in a deep breath, then while slowly exhaling, counts out loud from one to 10. She successfully completes the task using just that single breath…
I Treat My ALS Clinic Like an Olympic Challenge
The Paralysis Resource Center (PRC), a comprehensive support program for people with paralysis, was awarded a five-year, multi-million dollar grant by the Administration for Community Living (ACL), part of the U.S. Department of Health and Human Services. Effective as of July, the cooperative agreement between the two runs through June…
The U.S. Food and Drug Administration (FDA) has granted fast track status to Apic Bio’s experimental therapy APB-102, designed for amyotrophic lateral sclerosis (ALS) patients who carry mutations in the SOD1 gene that lead to misfolded proteins in cells. This designation accelerates the development of investigational therapies that…
Mitsubishi Tanabe Pharma America (MTPA) and Target ALS welcome nominations for the Target ALS Rebecca Luker Courage Award, honoring those who have demonstrated courage and made a positive impact on the amyotrophic lateral sclerosis (ALS) community over the past year. “We have dedicated ourselves to a singular…
Columns
A Taste of the Past
When my husband, Todd, was diagnosed with ALS, I grieved the loss of our dreams and our future together, but I had no idea how hard daily life would become. ALS caregiving spouses end up taking on a lot of roles. We advocate for resources and battle insurance companies.
BrainStorm Cell Therapeutics announced that a new cleanroom facility for manufacturing NurOwn, its experimental cell-based therapy for amyotrophic lateral sclerosis (ALS), has received good manufacturing practice (GMP) certification from the Israel Ministry of Health. GMPs are standards set to ensure that batches of a medicine are produced with consistent high…
The National Organization for Rare Disorders (NORD) is applauding the Biden administration for announcing a rule to protect consumers from surprise medical billing, in a joint statement with 26 other U.S. patient organizations. The interim final rule will implement patient protections required by the No Surprises Act. Surprise…
Columns
Brother, Can You Spare a Dime?
“Don’t the best of them bleed it out While the rest of them peter out? Truth or consequence, say it aloud Use that evidence, race it around There goes my hero Watch him as he goes There goes my hero He’s ordinary.” The lyrics of the Foo Fighters’ song…
Taking part in one Olympic event is an extreme accomplishment — but a U.K. couple are engaged in their version of 96 Olympic events, from synchronized swimming and skateboarding to cycling and wrestling, all in an effort to raise £30,000 (about $41,620) to support the Motor Neurone Disease Association…
Columns
Don’t Let ALS Define Who You Are
Once in a while, a newly diagnosed ALS patient will reach out to me and ask for help in their adjustment to life with ALS. I’m always happy to share resources, motivation, and tips, and usually, I begin our online friendship with the question, “Tell me a little about yourself?”…
Recent Posts
- US lawmakers reintroduce bill to improve access to treatment for ALS
- An emotional dance performance mirrored my life with ALS
- Expanded access program for ALS drug MN-166 at 50% enrollment
- US clinical trials lack diverse representation of ALS patients
- Scientists grow specialized motor neurons to aid in ALS research