Although cognitive and behavioral symptoms were documented in patients with ALS-type motor neuron disease in the late 1800’s, many of us were trained that ALS, and motor neuron diseases in general, do not impact thinking and behavior. Within the last 10 years, there has been a convergence of research on ALS clinical symptoms, neuro-radiographic patterns of pathology, and genetics that have shed important light on the association between motor neuron disease, cognition, and behavior.
The ALS Association commends the FDA for approving tofersen under the agency’s accelerated approval pathway for the treatment of people living with ALS connected to mutations in the SOD1 gene. This marks the first time the FDA has approved a treatment for ALS under accelerated approval and serves as a promising endorsement of the antisense technology that underlies tofersen.
On June 22, we led delegations of advocates in a full day of virtual congressional meetings to push Congress to support and pass critical legislation that will help the ALS community, including funding for ALS research and making expanded access to telehealth permanent -- 320 ALS Association staff and ALS advocates from 46 states shared their personal stories and experience living with ALS with more than 300 members of Congress and their staff.
As we continue to do whatever it takes to make ALS a livable disease, we are sharing some of the many resources we have available for the ALS community to help educate, inform and guide you through the ALS journey.
The Center for Genomics of Neurodegenerative Disease (CGND) at the New York Genome Center (NYGC) is a prominent player in ALS genetics, leading the way in ALS gene discovery. We are proud to report on its many successes in ALS genetics that were made possible by our major funding efforts.
The ALS Association works every day to fight for new treatments and a cure for ALS and improve the lives of people with ALS and their caregivers. That’s why we’re at the forefront of public policy. Learn more.
Andrew Rea, a New York-based chef, filmmaker, and host of the hugely popular YouTube cooking show “Binging with Babish,” was hit hard when his friend, Garmt van Soest, messaged him to say goodbye during his final days. On October 23, Garmt passed away from complications from ALS.
Clinical trials have proven to be the most reliable way — and ultimately the fastest way — to discover treatments that really work. The goal of clinical trials is to answer specific scientific questions to find better ways to prevent, detect, or treat ALS, or to improve care for people with ALS. People with ALS, along with family members and caregivers, are essential partners in this research. There are many ways you can search for a clinical trial, whether you want to participate in a trial or simply to get more information.
“To say that Gae Skager has been a beacon of hope in the ALS community is a significant understatement,” says Anne Supplee, Care Services Coordinator from The ALS Association Minnesota, North Dakota, South Dakota Chapter. “Since her diagnosis in 2003, Gae has made it her mission to educate others, raise awareness and fund research for ALS.”