ALS Association’s Advice to NINDS: Move Quickly on Research

ALS Association’s Advice to NINDS: Move Quickly on Research

In response to the National Institute of Neurological Disorders and Stroke‘s (NINDS) request for community input regarding what it should prioritize to accelerate amyotrophic lateral sclerosis (ALS) research, the ALS Association’s overarching message is this: move swiftly to help patients. NINDS, which is part of the National…

What Being Rare Means to Me

Throughout February, many patient columnists like me who write for Bionews, the parent company of this website, are writing columns recognizing Rare Disease Month, which culminates in Rare Disease Day on Feb. 28. Not only are we encouraging our readers to reach across patient community lines to learn…

FDA, Amylyx Meeting to Review AMX0035 for Possible Approval

A U.S. Food and Drug Administration (FDA) advisory committee has scheduled a virtual meeting with Amylyx Pharmaceuticals to review its application for the approval of AMX0035 to treat amyotrophic lateral sclerosis (ALS), the company announced. The online meeting to discuss data supporting the approval request is set for March 30.

Eledon’s ALS Antibody AT-1501 Renamed Tegoprubart

The investigational antibody therapy for amyotrophic lateral sclerosis (ALS), AT-1501, will now be called tegoprubart, its maker, Eledon Pharmaceuticals, has announced. The change comes after the United States Adopted Names (USAN) Council selected tegoprubart as the unique generic, or nonproprietary, name for the therapy candidate. The company…

Living as Though We Have a Future

Our daughter, Sara, is working on several pieces for an upcoming choir festival. One selection is the song “My New Philosophy” from the musical “You’re a Good Man, Charlie Brown.” The other evening, as our family gathered for dinner, Sara sang the lyrics in which the character Sally tries…

ALS Canada Research Program, Brain Canada Award Grants to 9 Projects

The ALS Canada Research Program and the Brain Canada Foundation partnered to award CA$1.125 million (about $885,600) in grants to advance the understanding, diagnosis, and treatment of amyotrophic lateral sclerosis (ALS). The nine multidisciplinary research grants, awarded late last year to teams across Canada, seek to promote global…

Showing Love for Our Caregivers

Since February is known as the month of love, I’d like to shower some love on all the ALS caregivers around the world. Add a special shoutout to family caregivers — the spouses, partners, family members, friends, and even neighbors who care for someone with ALS. It’s a challenging responsibility…