FAQ Page

Unification FAQ’s

Who made the decision to move to the new structure?

The decision to move to a unified structure was made by The ALS Association’s National Board of Trustees, which includes people living with ALS, a current caregiver, and those who have lost loved ones. It has been long in the making, informed by robust discussion and deep reflection. What has not changed – and will not change – is our commitment to put the people we serve at the forefront of everything we do.

What does Unified Structure with Distributed Mission Delivery really mean?
The strategic direction to build a unified Association was the result of efforts throughout the organization to find ways to work better together since 2007. As a unified structure with distributed mission delivery, we will be strategically aligned, fiscally efficient, and close to community.

Unified Structure means that the intent is to align ourselves as one collective organization that is strong, flexible, and connected.

Distributed Mission Delivery means that all the services that our community expects of us will be delivered at the community level, just as they are today. We stay connected to communities by maintaining offices, staff, and clinics, and building volunteer networks right where people are located.

What does “Whatever It Takes” mean?

We are on an urgent mission to make ALS a livable disease, to discover and fund promising treatments and to discover a cure. Our best opportunity to fulfill this promise and to continue delivering in the areas of Care, Advocacy, and Research is to reinvigorate our commitment to work as one. Driven by this belief, we will move from a federated to a unified structure. This decision was made by our Board of Trustees, which includes people living with ALS, a current caregiver, and those who have lost loved ones.

How will a unified organization better serve people living with ALS?

A more unified organizational model means enhanced depth and breadth of care, increased resources and capacity that will allow us to optimize our support to serving people with ALS and their families. Care will continue to be delivered with the same focus through our valued communities across our 34 chapters, one-to-one in this streamlined organization. This decision brings us closer together, unifies us in one direction, one pathway and one goal: to do whatever it takes.

People living with ALS and their families are at the center of every decision we make, today and always.

Our commitment to the people we serve is unwavering as we work to deliver on a promise to make ALS a livable disease and discover a cure.

Will ALS Association Chapters still exist?
ALS Association’s Chapters are and will continue to be vital part of the organization and services and care delivery. We want to reassure our entire community – people with ALS and their families, partners and clinics, and volunteers – of the organization’s ongoing commitment. Our daily work and focus on mission delivery will not change. The primary focus will always be on serving the needs of people living with ALS and their families. We highly value relationships with community organizations and clinics and look forward to continued and fruitful collaboration.

How will this change the services that The ALS Association Western Pennsylvania Chapter provides?

Services that The ALS Association provides to support people living with ALS and families will be maintained–and we will be making greater investments in care and research. Supporting our community is paramount – all the work we are doing now to support community will continue through this process. We anticipate being able to make greater investments in care in Western Pennsylvania and most importantly, research for a cure. Our Association is strong – we have the resources and the leadership to do this successfully and with minimal to no disruption to mission delivery.

How will unification affect those living with ALS and Caregivers?
Our Chapter is and always will be committed to our western PA community, and people living with ALS and their families are at the center of everything we do and every decision we make. The Chapter’s unification will mean preserving what is best in the service delivery while gaining traction and doing even more for the community and accelerating our mission in the areas of research and advocacy.

One of our greatest strengths is our connection with our communities and we will continue our work in and with communities like we do now. The care services staff will continue to carry on with their vital work and provide support, the development department will continue to plan our Chapter fundraisers and events and maintain our corporate partnerships, and our marketing team will continue to spread awareness and help us grow our ALS community.

Unification was a necessary step as we look to our goal of making ALS a
livable disease in the near future and work towards a cure. As a unified organization, we are identifying ways to ensure that every person living with ALS is able to access the services and care they need, no matter what zip code they live in.

How will unification affect volunteers?
Thank you to our amazing and dedicated volunteers for helping us enhance our mission to create a world without ALS. You will be integral in helping us achieve our ambitious goals and continued growth in services. It is truly your voices and talents that will assist us in shaping the future of this unified organization. Your role within our Chapter will remain the same as we count on our volunteers to make what we do happen. As we shift roles your contact on the staff may change, but we are dedicated to ensuring a smooth transition.

Please contact our Territory Executive, Merritt Spier, with further questions or concerns.