(photo from https://alsunited.org/)
Former chapters of the ALS Association, several of which of sued due to the national headquarter’s consolidation plan, formed a new entity called ALS United. Chapters sued in the Court of Chancery of the State of Delaware arguing that the plan to bring chapters into one organization was not in the best interest of the chapters.
The founding members of ALS United are: ALS Arizona, ALS Network, ALS New Mexico, ALS of Nevada, ALS United Ohio, ALS United Connecticut, ALS United of Georgia, ALS United Greater Chicago, ALS United Greater New York, ALS United Mid-Atlantic, ALS United North Carolina, ALS Northwest, ALS United Orange County, ALS United Rhode Island, ALS United Rocky Mountain.
In 2021, 15 independent chapters objected when the ALS Association proposed centralizing all chapters into one organization. The chapters all had assets that would have been surrendered to the main organization. The organization had 34 chapters at the time of the suit.
In siding with the chapters, Judge J. Travis Laster, vice chancellor, wrote “This is not about the power to merge. At present, this is about whether people have validly executed the power to merge. And when it comes to statutory issues, Delaware focuses on formalities.” He continued. “You don’t just get to wave your hands and say, “We’re going to do something like this, and we’ll fill in some blanks and we’ll sign it all up, so we’re going to approve it now. … The chapters are being threatened existentially. They’re being threatened with being eliminated. That is irreparable harm.”
Asked to comment, ALS Chief Marketing & Communications Officer Brian Frederick said via a written statement: “The ALS Association is urgently working on our plan to turn ALS from fatal to livable until it is cured. People living with ALS and their loved ones are at the center of everything we do. We welcome any and all organizations who wish to join us in accelerating research, optimizing care, and reducing the harms of ALS.”
ALS United President & CEO Jerry Dawson explained that an agreement was reached in September 2023 that allowed 15 organization to maintain their independence. “Like many organizations in the ALS space, we focus on three essential pillars: care services, research, and advocacy,” said Dawson. “What distinguishes ALS United is our structure — each member organization maintains independent local governance and financial management while collaborating nationally. This allows our members to be directly responsive to their communities’ specific needs.”
