ALS scholarship program to help students who have lost parents

The nonprofit organization ALS Northwest has partnered with the Oregon State Treasury to establish a college scholarship program through the state-administered Oregon College Savings Plan for students who have lost parents or guardians to amyotrophic lateral sclerosis (ALS). ALS Northwest will administer the Elinore Nudelman ALS College…

Teaching and Learning About ALS Life

I’m always eager to help others improve their understanding of what it’s like to live with amyotrophic lateral sclerosis (ALS). Likewise, I enjoy learning more about what others in the ALS community think and feel about living with the condition. Recently, I had the opportunity to satisfy both interests and…

Rare Disease Day Events Bring Awareness, Equity to Patients

Since 2008, Rare Disease Day — the last day of February — has brought together patients, caregivers, family members, friends, and advocates from around the world to raise awareness and improve equity for the more than 7,000 known rare diseases that affect more than 300 million people. In 2022, the…

Borrowing Pages From the Oktoberfest Playbook

“What you need, my son Is a holiday in Cambodia Where people dress in black.” Those lyrics from the song “Holiday in Cambodia” by the punk rock band Dead Kennedys illustrate how counterintuitive any public holiday display may appear. Without knowing the context, all-black attire may seem odd. Yet,…

Nominations Open for 2022 Eurordis Black Pearl Awards

Nominations are now open for the worldwide 2022 Black Pearl Awards from Eurordis-Rare Diseases Europe. The 12 award categories recognize individual advocates, policy makers, researchers, organizations, and companies who work to make a difference for the global rare disease community. The deadline for nominations is Sept. 10…