Author Archives: Mary Chapman

Those who wish to gain practical tools for living optimally with rare diseases are encouraged to attend the annual Living Rare Living Stronger Patient and Family Forum, hosted by the National Organization for Rare Disorders (NORD) and set this year for June 26-27. The conference brings together patients,…

With a heightened emphasis on clinical trials, improved care, and identification of risk factors, the ALS Association has created a plan intended to make amyotrophic lateral sclerosis (ALS) “livable” by 2030. While it continues to search for an ALS cure, the nation’s largest ALS nonprofit organization believes that, within a…

To further support amyotrophic lateral sclerosis (ALS) patients through research and clinical studies, the Canadian province of British Columbia is giving CA$2 million (about $1.65 million) to the ALS Society of BC  to support a collaboration called Project Hope. In partnership with the University of British…

The U.K. research organization LifeArc will match £500,000 (about $704,000) of the money raised by the director of the Leeds Rhinos’ rugby club in a series of marathons he ran to support research into amyotrophic lateral sclerosis (ALS) and other motor neuron diseases. The match for this part…

Applications for a $60,000 one-year grant are now open for researchers working to discover or validate biomarkers for amyotrophic lateral sclerosis (ALS) or a similar disorder. Those interested in trying for this award need to submit a letter of intent as to their project’s nature and intent by May 7.

After a protracted campaign to make it happen, Major League Baseball (MLB) agreed to set aside each June 2 to pay tribute to the late Lou Gehrig, the legendary New York Yankees first baseman whose career was cut short by amyotrophic lateral sclerosis (ALS). The inaugural “Lou Gehrig…

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…