Transforming Ourselves to Transform the Fight Against ALS

As you may have heard, we are going through a period of transition and I just want to take a moment to explain what is happening. Most of you want to know that we will continue to provide high-quality care services, state and national advocacy, and global ALS research. Let me reassure you -- we will. In fact, we will now better be able to do those things -- for everyone, everywhere.

For now, if you would like to know more about how we are changing and how we got here, please read on.

On Friday, September 1, most of our chapters will be merging into one unified organization and some will be separating from The ALS Association and becoming independent organizations.

A few years ago, we came to a crossroads. Advances in ALS care and treatments – some of which we invested in or helped lead – were changing the experience of living with ALS. We could keep doing the same -- providing care for people living with ALS, funding research, and advocating for better policies -- all with the hope that this would continue to advance the fight against ALS for the people we serve…but we knew that wouldn’t be right, nor enough.

We chose to reassess how we do all those things, directing new energy toward an ambitious and urgent goal – making ALS livable until we can cure it. 

Imagine people being diagnosed and not immediately believing ALS is a terminal disease, but something that a person can live with for many long and meaningful years, such as living with multiple sclerosis (MS). Of course, ridding the world of ALS is our larger goal, but all of the steps we are taking to make ALS livable will help us get to ALS cures, as well. 

We created a very specific plan with measurable goals. To accomplish them, we knew we would need to do things differently.

Our organization was created at a time when phone calls and faxes were our primary means of communication and our health care system was even more antiquated. Many small ALS organizations joined together to create one ALS Association which was governed as a federation in which there were separate but dependent organizations operating with certain rules. Arbitrary borders were created to determine who could provide care to whom and where. Those borders created more barriers than benefits. 

To best support people living with ALS and their loved ones, we knew we needed to remove those borders and all start working in the same direction toward our north star -- making ALS livable until we can cure it. That meant unifying ourselves as an organization. Our Board of Trustees – made up of people living with ALS, caregivers, loved ones, and others impacted by ALS -- then gave each chapter the choice to unify. A majority of the chapters were willing to unify, some were not. 

Fifteen chapters chose not to unify with the Association and joined together to file a lawsuit to block unification. We disagreed with the claims they made in their suit, but we’re not going to relitigate them here.  

To avoid unnecessary litigation costs and further uncertainty, we reached a settlement with those chapters.

On September 1, 18 of our chapters will be merging into The ALS Association. And those chapters structurally separating from The ALS Association will do so on the same date.

For us, this is an exciting and critical moment in The ALS Association’s history. We have the opportunity to significantly expand programs and services to make ALS livable for the people we serve until we can cure it. We want to ensure everyone, everywhere, receives high-quality care and support.  

Since we started the unification process, we have seen immediate impacts for people living with ALS around the U.S. We are able to better share data and information so that the advancements in care, research, and advocacy that are improving the lives of people living with ALS are available across the country. We are also engaging with state governments like never before to provide better care, funding, coverage and protections for people living with ALS. And the efficiencies we are already realizing in our operations are freeing our teams up to better focus on our mission and devote more of our resources to our community. 

I would like to take a moment to thank everyone – people living with ALS, loved ones, caregivers, volunteers, staff, advocates, and other members of the ALS community – who helped us get to this point. I am confident that we are much better positioned to continue delivering meaningful impacts for the entire ALS community in the years to come.

Together, we can make ALS livable for everyone, everywhere, until we cure it. 

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Calaneet Balas
President & CEO
The ALS Association

 

 

Comments

Submitted by: Katie B. on Sat, 09/02/2023

Congrats on your strides in helping those with ALS. And good luck as you move forward in this new structure to do even more for those suffering, with the goal of finding a cure!

Submitted by: Stephanie O. on Fri, 09/08/2023

Katie, thank you so much for your words of encouragement as we move forward with one common goal to make ALS livable for everyone, everywhere until we can cure it.

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