Foundation Blog: Advocacy The Les Turner ALS Foundation has joined with several other national ALS patient advocacy organizations (ALS Association, I AM ALS, Muscular Dystrophy Association and Team Gleason) in a letter to U.S. House of Representatives’ leadership requesting that …
Data from Amylyx’s CENTAUR trial shows promise in slowing ALS progression
We are very pleased to share promising data published this week in the New England Journal of Medicine from the recent CENTAUR trial, conducted by Amylyx Pharmaceuticals, showing that AMX0035, the combination drug of sodium phenylbutyrate–taurursodiol, can slow functional decline …
Difficult Conversations Can Be Some of the Most Important
Making Your End-of-Life Wishes Known Author: Karen Raley Steffens, RN, CHPN, CCM ALS Support Services Coordinator “You may not control life’s circumstances but getting to be the author of your life means getting to control what you do with them.” …
A Letter From Our CEO
Dear Friends, On Friday, due to the COVID-19 outbreak, the Governor of Illinois issued a statewide shelter-in-place order, similar to what we’ve seen in other parts of the country. This news creates challenges for all of us. How do we …
Telehealth – How We’re Adapting
The need to adapt to changing circumstances is not new to those with ALS. ALS requires constant attention and creativity to stay ahead of physical and emotional changes. As news continues to emerge about precautions against COVID-19, we are all …
Tips for Preventing the Spread of Respiratory Disease
As someone living with ALS or in contact with someone living with ALS, you should always take special precautions to safeguard your health and the health of those around you. With the latest viral outbreak, our Support Services team and …
Mechanisms Discovered Behind C9orf72 ALS Mutation
Evangelos Kiskinis, PhD, of our Les Turner ALS Center at Northwestern Medicine, alongside fellow Northwestern Medicine scientists, recently discovered the mechanisms and consequences behind ALS defect gene C9orf72. “A DNA mutation in a gene known as C9orf72 is responsible for …