Hawken Miller, features writer —

Patient registries help record how many cases of a particular disease there are across the country, and many also log related genetic, clinical, and biological information. Some U.S. registries, including those dealing with infectious diseases, have mandatory reporting requirements. But for many other diseases, including amyotrophic lateral sclerosis (ALS),…

In amyotrophic lateral sclerosis (ALS), as in many diseases, patient registries, biorepositories, and natural history studies are helpful both in planning clinical trials and as tools for scientists to learn more about how a person’s lifestyle, genetics, and environment can potentially lead to…

Healthcare has long harnessed the power of big data. Examples range from the Human Genome Project, a worldwide 13-year effort to map DNA, to the adoption of electronic medical records— allowing doctors to quickly access patient information at points of care — and the rise of personalized medicine, which tailors…

Tara Gottlieb lost her father to amyotrophic lateral sclerosis (ALS) in November, but the Massachusetts resident said she’s only just begun advocating for people with the disease and working to help find a cure. Gottlieb remembers her father, David Gottlieb, as a generous, selfless, caring man. She and her brother,…

Nonprofits, scientists, governmental organizations, and the rare disease drug development industry have long cited 7,000 as the average number of rare diseases in the world. But a new analysis shows there are as many as 10,867 rare diseases globally. And that…

High school student Cole Spector is giving people with amyotrophic lateral sclerosis (ALS) a reason to smile by becoming their pen pal. In January, Spector, who turns 17 at the end of this month, started sending cards to ALS residents in San Diego after coming up with the idea…

Note: This story was updated June 16, 2022, to reflect that competitor Kyle Brown was not disqualified, but did not finish the swim portion of the Ironman World Championship within the time limit and was not able to move forward in the competition.   Patrick Harfield was on his last legs.

Lisa Cross thought having amyotrophic lateral sclerosis (ALS) meant she would have to give up on acting and the theater. A longtime stage actor, Cross, 66, had worked in just about every aspect of the entertainment industry: she was a dancer and singer; a director, choreographer, and teacher; an…

A partnership between Rolls Royce and the U.K.-based Motor Neurone Disease (MND) Association is helping people with amyotrophic lateral sclerosis (ALS) preserve the sound of their voices simply by reading a book into a computer. Called voice banking, the process is a way to record a person’s voice…

More than 5,000 people are diagnosed with amyotrophic lateral sclerosis (ALS) each year, and the out-of-pocket costs of care are an estimated $250,000 for each person with the disease, according to the ALS Association. These are just a couple of the statistics about ALS that advocates, organizations, and…