Mary Chapman,  features writer—

To mark what would have been the 79th birthday of the theoretical physicist Stephen Hawking, who lived with amyotrophic lateral sclerosis (ALS) for 55 years, Answer ALS is providing researchers with free access to the world’s largest ALS data portal. To help spread the word, the organization…

The National Organization for Rare Disorders (NORD) is seeking individuals willing to share real-life experiences with rare diseases to speak at its upcoming virtual Living Rare, Living Stronger NORD Patient and Family Forum. The interactive, patient-focused forum will be held online June 26-27. The deadline to apply for…

After years of behind-the-scenes work, the ALS Association is celebrating passage of the ALS Disability Insurance Access Act of 2019, likely to end the nearly half-year wait amyotrophic lateral sclerosis (ALS) patients go through to receive Social Security Disability Insurance (SSDI) benefits. The U.S. Senate earlier this…

Target ALS is launching an expansive $15 million research initiative aimed at discovering biomarkers and developing new scientific resources for amyotrophic lateral sclerosis (ALS). The Target ALS Diagnosis Initiative, touted as the first of its kind, will create grants and scientific resources to identify needed biomarkers. Such indicators allow…

The Muscular Dystrophy Association (MDA) is encouraging the U.S. Centers for Disease Control and Prevention (CDC) to recommend that people living with neuromuscular diseases (NMDs) have early access to any federally approved COVID-19 vaccine. The MDA made its request in a letter to members of the…

To empower and equip members of the rare disease community to engage state leaders in matters of importance to patients and their families, the National Organization for Rare Disorders (NORD) has launched an initiative across the U.S. Its goal is to establish a Rare Disease Advisory Council (RDAC)…

The campaign for a league-wide annual Lou Gehrig Day recently received a major boost as all 30 Major League Baseball (MLB) teams endorsed an effort to honor the late New York Yankees star first baseman and raise awareness of amyotrophic lateral sclerosis (ALS). Lou Gehrig Day has…

After working for months behind the scenes, the ALS Association is calling a strengthened Accelerating Access to Critical Therapies for ALS Act (ACT) a key step toward swifter development of new therapies. The revised bill (HR 8662/S. 4867) calls for $100 million over five years for amyotrophic…

A photo of a bespectacled young boy, his red baseball cap slightly askew as he  enjoys time outside, will be featured on the front cover of an upcoming calendar in the “Same But Different” contest to raise awareness about rare disorders. “A Lovely Day Out in Kew Gardens,”…

October is International Augmentative and Alternative Communication (AAC) Awareness Month, set aside annually to inform the public about how amyotrophic lateral sclerosis (ALS) patients and others use these devices to communicate. From educational presentations to personal videos, supporters globally are marking the event organized by the International…