ALS Association chapters throw cold water on national move to take them over, seize assets

One by one the major health organizations such as the American Heart Association, and the American Cancer Society have taken advantage of their loose legal ties with their local state offices to consolidate them – in some cases acquiring or firing staff, closing and consolidating state offices, changing program focus, and showing volunteers the door. The stated overall goal is to turn the organizations into leaner and meaner fundraising machines – de-emphasizing programs, and eliminating the time consuming effort of training and managing a core base of volunteers.

In many ways, the success has been seen in millions more raised – if that money is given over to research then the ends may be said to justify the means. But if even part of it goes to lining the pockets of management, questions can be raised. Betting on volunteers losing the enthusiasm to pursue the issue through advocacy among themselves, with medical groups, and legally, seems to be a good bet, as agencies have seen offices consolidated, and in many cases closed, albeit for branded key fundraising events such as Walks, that use a team concept, with a small number of nationally trained staff set out with a singularly focused goal.

In most cases, the national health organization chapters have programs loosely aligned with the national organization priorities. They use their printed information, often maintaining only a landing page or two on the national website, filing taxes together, and giving over to the national a percentage of dollars not restricted to the local state.

The work of prevention, in the case of health agencies, and direct programs such as support groups were relegated to hospital groups, and as they have fallen in financial stability, they have often dwindled.

Now comes the ALS Association

One group gearing up for the legal battle is the ALS Association. According to STAT, “a blistering battle has broken out between the ALS Association and more than a dozen of its state and local chapters, which are resisting a move by the national headquarters to dismantle their offices and run operations around the U.S.” Chapters give 14% of every dollar raised to the national organization.

In the case of the Ice Bucket Challenge, millions were raised for research – and that research resulted in more advances than ever before. But now that the “bucket” has dwindled over the years, with less professional and successful national management of the program, the national office says it’s in financial dire straits.

In Rhode Island, the ALS Chapter is in Warwick and maintains a staff of four – two are in the program services cluster, managing a clinic program and care services, with one full time fundraiser and one Executive Director. Their board includes 18 local individuals and 1 medical director. Its mission, as most small nonprofit chapters, does not highlight research but is listed as “public awareness of ALS disease and patient and family support”. For the 2019 fiscal year, according to their IRS filing, they listed $160,00 in public support, most from its annual Walk to Defeat ALS.

Bloomberg Law reports that “More than a dozen local chapters of the ALS Association sued its national organization over an ongoing restructuring that would allegedly set back its mission by centralizing operations.

The lawsuit, made public Monday, is backed by 14 of the 16 independent ALS Association affiliates that aren’t in the process of winding down and merging with its national headquarters. Eighteen other chapters support the restructuring, according to the complaint. The ALS Association is accused in a lawsuit by more than a dozen chapters of “catastrophic leadership failures.”

The suit in Delaware’s Chancery Court accuses the national organization … of trying to bully the chapters into the consolidation”.

National ALS Association statement on lawsuit raised by Chapters opposing unification

“Our Board of Trustees, which includes people living with ALS, caregivers, and loved ones, decided to unify our organization so that we could better serve all people living with ALS and their families. Unfortunately, some chapters that disagreed with the decision want to maintain the status quo, which is in conflict with the bold transformation needed to strengthen our fight against ALS. Their lawsuit diverts precious resources, time, and dollars that could be spent supporting people living with ALS and promising ALS research. We are confident that our decision to unify was legal and sound, so we will address the unmerited claims made in the lawsuit, while remaining focused on our urgent work of making ALS livable until we can cure it.”

According to the lawsuit, some states have agreed to surrender their independent charter and have transitioned to be part of the national office, with staff now working for them. Other state chapters are in the law suit opposing the takeover and wanting to keep their independence.

In Massachusetts – they are one of 18 chapters that have voted to surrender their charters and accept de-federation.

In Maine, New Hampshire & Vermont – they had already consolidated under the name “Northern New England” and consolidated with the national office prior to the legal effort.

In Connecticut, they are part of the litigating chapters opposing the takeover.

More from Rhode Island

After contacting two board members and long time volunteers in Rhode Island, J. R. Pagliarini and P.J. Prokop, we were directed to the chapter’s spokesperson on the issue, from Rubenstein in New York City. The volunteers note that because this is now a legal matter what the group says needs to be done cognizant of that action. Rubenstein provided RINewsToday this statement Monday afternoon:

Statement From the 15 Independent Chapters of the ALS Association (including RI)

“Last month, 15 independent chapters of The ALS Association took necessary action to halt a forced merger unlawfully terminating the chapter system and seizing the assets of the chapters.  

Although the Association funds research and legislative advocacy, the chapters provide critical services directly to ALS patients, families, and caregivers across the United States, including in California, Georgia, Illinois, Ohio, New York, and Rhode Island. Each has operated independently in their own communities for decades, managing all patient and family care services and developing unique partnerships and successful fundraising initiatives to sustain continued care and support.  

A National takeover would direct all local care operations out of Washington, and categorically end the entire chapter system, eliminating their ability to serve their respective communities, and consequently leading to inferior patient care. The 15 chapters are united in their opposition to the merger, and after exhausting efforts to reach a compromise, are now taking decisive action to protect the community of patients, families, and caregivers they serve.”

While consolidation may be an advantage to rural or small states without major research hubs, for Massachusetts, where the hub of research in the world on ALS is being done, as well as Rhode Island, losing local direction and input is a major concern as well as their program autonomy.

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ALS Ice Bucket Challenge

Thousands of people all over the world did the viral Ice Bucket Challenge in 2014, and many went on to donate money and challenge others to do both activities. That viral fundraising which has never before been seen and quite likely will not ever be replicated raised more than $115 million, and over $220 million worldwide. The ALS Association says it funded 130 research projects in 12 countries, bringing forth 40 potential treatments, some of the first offering real hope for those afflicted with an always-fatal disease. In addition to the monetary success, other fundraising efforts were more successful and education and public awareness increased. It would be hard to find anyone who doesn’t have a basic recognition of ALS, amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease.

National nonprofit salaries skyrocket when consolidations happen

The CEO of the ALS Association, in 2019, was paid approximately $354,500 with 8 others on the national staff being paid salaries over $200,000. In Massachusetts the CEO makes over $112,000 and the Rhode Island CEO a mere $29,000 (all figures are for 2018/2019 as reported on 990s filed and do not include benefit values).

By contrast, the CEO of the American Heart Association makes $2.5 million, with the Eastern States (RI included) CEO making over $377,000, and the American Cancer Society CEO nationally makes $602,400. All figures are several years old.

Here is the link to the lawsuit brought by the chapters against the national ALS Association:

This is a developing story