Going Your Own Way: Alzheimer’s Disease Resource Center, Inc. Celebrates Two Years of Independence

Tuesday, June 9, 2015

BAY SHORE, N.Y. -- As part of the national Alzheimer’s Association chapter, Alzheimer’s Disease Resource Center, Inc. (ADRC) had seen its efforts to help local residents in need stymied as all the money raised on Long Island went back to the national chapter, which redistributed the funds to other local chapters in the United States. This meant that the money that went back to the Long Island chapter was only a fraction of what it raised. Perhaps the most revealing of this was a recent report from Charity Navigator, a nonprofit watchdog group, showing that Harry Johns, President/CEO, Alzheimer’s Association, was the fourth highest-paid nonprofit executive in the U.S., collecting $2,731,016 a year.

Two and a half years after disaffiliating itself from the national chapter, ADRC has been the only local organization to provide assistance to individuals on Long Island suffering from Alzheimer’s disease and dementia and fund local research. There are currently 60,000 people on Long Island who are currently suffering from this disease. With the growing number of aging “baby boomers,” that number is expected to increase.

On November 6, 2012, ADRC officially announced it was disaffiliating itself from the national Alzheimer’s Association chapter, announcing that it would continue to support research that may lead to a cure for Alzheimer’s disease and to provide care, support, and educational programs for families who are coping with the disease and other dementias. Recently, ADRC provided research grants to Winthrop-University Hospital and the New York Stem Cell Foundation as they try to find the causes and a cure for Alzheimer’s disease.

Following the disaffiliation, the national and local chapter’s dispute went to arbitration. On April 2014, an arbitration panel ruled that ADRC was allowed to retain $1.3 million in net assets it received from the national chapter from FY 2008 to FY 2012, as well as the list of Long Island-based donors and volunteers who registered before ADRC’s disaffiliation.

While the organization was able to get its funding back from the national chapter, ADRC was struggling to continue receiving money from Albany. In 2008, the local chapter — now ADRC — entered into a five-year contract with the New York State Department of Health, in which the group would receive funding from the agency. But when ADRC disaffiliated itself from the national chapter four years later, the state Health Department stopped funding.

In late 2013, Mary Ann Malack-Ragona, Executive Director/Chief Executive Officer, Alzheimer’s Disease Resource Center, Inc., met with representatives from Governor Andrew Cuomo’s office, the Office of the Budget, the NYS Office of the Aging and the NYS Department of Health to discuss the lost funding and impress upon those at the meeting how important that funding is to Long Island families affected by Alzheimer’s who are receiving ADRC’s services. Ms. Malack-Ragona also reminded those in attendance that, while ADRC has a new name, the work that the agency was performing for the community had been ongoing since 1983 and had been funded by the state since 2004. When Governor Cuomo introduced the state budget for this year, Senator Boyle and Senator Flanagan submitted legislation that ADRC’s grant be reinstated. The request was included in the final budget.

ADRC has made its presence felt throughout the Long Island and metropolitan New York areas. It now maintains a satellite office in Southampton and is branching out by offering 27 caregiver support groups throughout Long Island and seven Seminar Series presentations at Atria Senior Living at Huntington; Winthrop-University Hospital in Mineola; Amber Court Assisted Living in Westbury; Upsky Long Island in Hauppauge; Rogers Memorial Library in Southampton;

Somerset Gardens in Plainview and the Huntington Public Library. ADRC also offers referral services for those in Queens County who are looking for an assisted living facility for a loved one, home companion care or a support group.

“When people donate to ADRC, they can be sure that every dollar goes stays on Long Island for programs to support affected families and research, not in Chicago,” said Ms. Malack-Ragona, citing the national chapter’s location. “The disaffiliation from the national Alzheimer’s Association chapter, while challenging, provides us with the independence needed to grow and provide more services to Long Islanders in need.”

For additional information on ADRC, please contact Mary Ann Malack-Ragona, Executive Director/Chief Executive Officer, at (631) 820-8068 or visit www.adrcinc.org.

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Alzheimer’s Disease Resource Center, Inc. — which is headquartered in Bay Shore and has a satellite office in Southampton — is the only local Alzheimer’s Disease advocacy and educational facility whose mission is to fund local research and provide hands-on support and services to families on Long Island and the New York metropolitan area. ADRC works with family members, health care professionals and researchers to ensure quality health care and support to those impacted by Alzheimer’s disease through care and consultation, information and referral, training, support groups, and caregiver safety products.