Mary Chapman,  features writer—

To honor the memory of Broadway actor and singer Rebecca Luker, who died of complications due to amyotrophic lateral sclerosis (ALS) last year, Target ALS will present a live-streamed concert on May 4. All proceeds will go to support ALS research, the nonprofit group announced. The show, called “Becca,”…

Under a new local partnership, Mississippi residents who have amyotrophic lateral sclerosis (ALS) will have free access to communication devices and training. The program is a collaboration between speech-language graduate students at the Mississippi University for Women’s Speech & Hearing Center and the ALS Association Louisiana-Mississippi Chapter.

ALS Focus has opened a new survey looking specifically at the needs and challenges of caregiving for people with amyotrophic lateral sclerosis (ALS). Survey responses are expected to influence ALS programs and policy decisions. Register here to participate if you are an adult caregiver and live in the…

Rare Disease Day at NIH, organized by the National Institutes of Health (NIH) and taking place on March 1, will feature panel discussions, patient stories, research updates, TED-style talks, and a presentation by a Nobel laureate recently recognized for her work on a gene editing tool. The free, virtual…

The My Name’5 Doddie Foundation has donated a total of £300,000 (about $420,600) to two U.K. nonprofits to support people living with motor neuron diseases (MND), including amyotrophic lateral sclerosis (ALS). The foundation, established by the former Scottish rugby player George Wilson “Doddie” Weir, gave £200,000 to the…

With a new version of a low-cost eye-tracking system called EyeWriter, artists and others who are paralyzed due to amyotrophic lateral sclerosis (ALS) can more accurately draw and create images using only their eyes. The latest EyeWriter 2.0 software improves the system’s accuracy and now also allows the…

Scores of virtual events are afoot around the world to mark Rare Disease Day 2021 on Feb. 28. The activities are focused on heightening awareness about rare diseases and the hundreds of millions of individuals they are thought to affect. Patients, caregivers, and advocates worldwide will sport denim ribbons…

While progress was made last year on newborn screening and other policy issues critical to rare disease patients, a “State Report Card” argues that many concerns — notably out-of-pocket costs for prescription medicines and access to affordable comprehensive care — still need attention. Those were the findings of the…

As a new U.S. Congress prepares to start the annual process of determining funding for federal programs, the ALS Association is asking its advocacy network to press their legislators to expand support for research in amyotrophic lateral sclerosis (ALS). “This year, the ALS Association will aggressively pursue new and…

Caring for a loved one with a rare disease, especially during these uncertain times, demands significant time, attention, patience, and dedication. To help meet that need, the National Organization for Rare Disorders (NORD)’s Rare Caregiver Respite Program may be a helpful resource. The program seeks to give a…