Mary Chapman, features writer —

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…

With a €1 million (about $1.1 million) prize being offered, researchers are invited to join a challenge that seeks to give people with motor neuron diseases (MND) – including those with amyotrophic lateral sclerosis (ALS) – improved independence and a more normal lifestyle. The Cullen Education and…

Same But Different, a nonprofit U.K. group that uses art for social change, is inviting people to choose their favorite photographs in a calendar contest to heighten awareness of rare diseases, including amyotrophic lateral sclerosis (ALS). The organization’s panel of judges has pared the number of contest submissions…

Target ALS is teaming up with Spartan on a global initiative to raise funds for research that will contribute to the fight against amyotrophic lateral sclerosis (ALS). Called “The Toughest Challenge for the Hardest Fight,” the inaugural campaign asks participants to raise funds by participating in…

The Motor Neurone Disease Association (MNDA) has begun a campaign in the U.K. calling for more accessible homes for people with motor neuron diseases, which includes amyotrophic lateral sclerosis (ALS), and a better system for delivering housing adaptations. Called Act to Adapt, the initiative follows the…