More than 600 people participated in the 10th annual Rare Disease Week on Capitol Hill 2021, held virtually July 14–22, to advocate for the rare disease community. Hosted by the EveryLife Foundation’s Rare Disease Legislative Advocates (RDLA) program, the event brings together community members from across the U.S. to…
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…
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…
“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…
A £500,000 (almost $700,000) grant the My Name’5 Doddie Foundation was given to the LifeArc & MND Association Translational Research Fund to support work that might lead to new treatments for motor neuron diseases (MND), including amyotrophic lateral sclerosis (ALS). The fund, jointly established by LifeArc…
Amylyx Pharmaceuticals has raised $135 million to advance the clinical development and the potential launch of its lead candidate AMX0035 for the treatment of amyotrophic lateral sclerosis (ALS). The Series C financing round, led by Viking Global Investors, also will be used to support further research and…
Normally, we live much of our life at home. My husband, Todd, has ALS and is paralyzed. He spends his time in his wheelchair set up at his computer, and I can’t go far in case he needs help. Our traveling days are over, and we can’t visit most…
