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 …
Sustainers for Sustainability
These past several months have been unexpectedly difficult for everyone. For those facing the daily challenges of ALS, the many uncertainties and unanswered questions brought upon by the COVID-19 pandemic can be simply overwhelming. “Our commitment and number one goal …
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.” …
How to Prepare for a Telehealth Visit
Due to the recent COVID-19 pandemic, many people, especially those living with ALS, have needed to change their routines in several ways including pivoting their medical appointments to telehealth visits. A recent article published in Brain & Life Magazine shared …
Introducing the Joan & Paul Rubschlager Professorship
When Paul Rubschlager’s father was diagnosed with ALS in 1974, little was known about the cause of ALS and even less existed to help families facing this heartbreaking disease. After Paul’s father passed away in 1975, he and his wife …
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 …
