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LI Alzheimer's chapter splits from parent nonprofit

Disagreements between a Bay Shore Alzheimer's advocacy group and officials at the nation's largest organization for people fighting the disease have resulted in the local nonprofit breaking away and becoming independent.

The former Long Island chapter of the Alzheimer's Association has reorganized, and its new name is the Alzheimer's Disease Resource Center, said Mary Ann Malack-Ragona, executive director and chief executive. She also held those positions at the local Alzheimer's Association chapter.

The change, she said during an interview this past week, is effective immediately. The new resource center, she said, will focus on care-taking issues, education and aid to those affected by the mind-robbing disease -- the same areas of focus undertaken as a chapter in the larger network.

Malack-Ragona said the split was less than harmonious.

"They failed to protect us," she said of the parent organization, noting that the New York City affiliate was allowed to encroach on Long Island's territory, especially in terms of fundraising. Money that should have stayed on Long Island and help grow projects for people with Alzheimer's here went instead to similar efforts in the city, she said.

"We want to help the families here on Long Island," Malack-Ragona said.

Malack-Ragona said the Bay Shore-based nonprofit had been a chapter of the larger organization since 1983.

But the Alzheimer's Association, which is based in Chicago, has a different explanation of why a once-thriving Long Island chapter is now independent.

"After a history of noncompliance with Alzheimer's Association policies and procedures," said Erin Heintz, spokeswoman at the association's headquarters, "the national board of directors of the Alzheimer's Association made the decision to disaffiliate the Long Island chapter from the national organization on Oct. 6."

Heintz did not elaborate on which of its rules were broken by the Long Island chapter or whether the local group was reprimanded or warned about potential consequences of the alleged noncompliance.

"The national board is disappointed this action was necessary," Heintz said, noting the national group intends to maintain a presence on Long Island.

Malack-Ragona said the former chapter's board of directors voted to break away from the association before the letter of disaffiliation was sent. News of dissension between the local and national organizations was made public only last week.

Alzheimer's disease is a progressive and irreversible loss of brain function that gradually destroys memory and thinking, according to the National Institute on Aging.

In most people, symptoms first appear after age 60, but in some rare heritable forms of the disease, symptoms can appear at 40, or younger. As many as 5.1 million people in the United States have Alzheimer's disease, according to institute estimates.

An explosive number of cases -- 14 million -- are expected by 2050 unless a cure or preventive measure is found.


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