Honor a loved one by including them on a March of Faces banner. The banners travel with the Foundation and are displayed at various events throughout the year as a way to recognize those we have lost to ALS despite …
Personalize Your Care Act
Take action and urge your Representative to support the Personalize Your Care Act (PYCA)! This act was introduced by Earl Blumenauer (D-OR) and Rep. Phil Roe (R-TN) in the US House of Representatives to increase accessibility to and public awareness …
Today’s Caregiver: 5 Lessons I Have Learned From Being A Young Caregiver For My Husband With ALS
Wife of PALS, Sherlyn Brubeck recently shared the five lessons she has learned from being a caregiver to her husband with Today’s Caregiver. Since being diagnosed with ALS in 2014, Sherlyn has become her husband’s primary caregiver. To read the …
Legislation Introduced to Waive Five Month SSDI Waiting Period For People Living With ALS
Take Action to urge your Members of Congress to co-sponsor the “ALS Disability Insurance Access Act” and support people living with ALS by getting them the benefits they need faster. The Act, which was introduced by Senators Sheldon Whitehouse (D-RI) and …
International Alliance of ALS/MND Associations Update
The International Alliance of ALS/MND Associations has recently revised the guideline on the fundamental rights of people living with ALS/MND. These rights for people living with ALS/MND have been created to represent ideal conditions for those living with the disease …
Phase 3 Clinical ALS Drug Trial
The Foundation is pleased to announce the start of a new clinical drug trial for ALS at the Lois Insolia ALS Clinic at the Les Turner ALS Research and Patient Center at Northwestern Medicine. VITALITY-ALS is a Phase 3 clinical …
Recap: Hope Through Caring Gala
At this year’s Hope Through Caring Gala, 450 guests honored Madeleine and Joe Glossberg and Joan and Paul Rubschlager for their commitment in the fight against ALS. The packed house also celebrated those courageously living with ALS and remembered those …
MMWR in Brief
The Center for Disease Control and Prevention’s MMWR in Brief summarizes key points from “Prevalence of Amyotrophic Lateral Sclerosis – United States, 2010-2011.” New information in this report includes the first prevalence estimate and description of demographic characteristics of ALS …
Registry Adds Two New Surveys
The Agency for Toxic Substances and Disease Registry (ATSDR) added two additional risk factor surveys to the National ALS Registry. The new surveys ask about head trauma and health insurance coverage. There are now a total of 17 surveys designed …
Annual ALS Surveillance Meeting – August 13 – 14, Atlanta, GA
Foundation representatives Wendy Abrams, Executive Director, and Shari Diamond, RN, Director of Patient Services, were invited to attend the Agency for Toxic Substances and Disease Registry (ATSDR) Annual Surveillance Meeting to hear the first report on the National ALS Registry …