ALS Association, ‘Stronger as One,’ Adopts Unified Structure

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by Mary Chapman |

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In keeping with its commitment to turn amyotrophic lateral sclerosis (ALS) into a “livable disease” by 2030, and to ramp up discovery and funding of new therapy candidates, the ALS Association is moving to a unified structure from a federated one.

“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,” Calaneet Balas, the group’s president and CEO, stated on a webpage notice about this decision. “Driven by this belief, we will move from a federated to a unified structure.”

Reported to have been long in the making, the decision was finalized this month by the ALS Association’s board of trustees, which consists of patients, a caregiver, and those who have lost loved ones to the progressive neurodegenerative disease. A more unified organizational model, the association stated, will help it in improving the scope of care, in increasing capacity, and in adding to resources available to patients and their families.

The change was “informed by robust discussion and deep reflection,” Balas stated. The association’s national office is in Arlington, Virginia.

In general, federated nonprofits have a national office and geographically dispersed affiliates or local chapters; all share the same mission but operate independently. They generally seek to act together, but can have conflicting objectives that work against strategic unity and efficient and effective resource use.

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The ALS Association seeks to assure the community — patients, families, clinics, partners, and volunteers — that while its structure will change, its priorities will not.

“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,” Balas stated. “This decision brings us closer together, unifies us in one direction, one pathway, and one goal: to do whatever it takes.”

Supporting the development of pipeline treatments remains a guiding goal. In addition to helping patients and families cope with the daily challenges of living with ALS through information, resources, and referrals, the ALS Association to date has given more than $111 million to research efforts worldwide into better treatment and care.

“While this is a beginning, a new direction that will take a tremendous amount of input, collaboration [and] thoughtful and deliberate decisions to implement, we approach this process with a renewed sense of urgency,” Balas added. “This is what it takes. We are stronger as one. One team. One mission. One world without ALS.”