Wednesday’s Rally To End Alzheimer’s in Albany brought together nearly 150 advocates from across the Empire State. The message was clear: more must be done to combat the Alzheimer’s epidemic.
New York State is home to 320,000 individuals that have Alzheimer’s disease and their nearly 1 million unpaid caregivers. The financial toll of the disease is evident in the $13.7 billion in unpaid care provided by family and friends. Advocates called for measures including greater funding for community-based services and legislation to protect individuals with the disease at home and in facilities.
Cathy James, CEO of the Central New York Chapter and co-chair of the Coalition of New York State Alzheimer’s Association Chapters, opened the rally. In her remarks, she called upon one of Margaret Mead’s most famous quotes to illustrate the lengths the Alzheimer’s movement have taken in New York.
“Margaret Mead once said that we should, ‘Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.’ Our group of voices assembled here can change and will change how New York views Alzheimer’s disease. In fact, you already have.”
James reminded the assembled advocates that it was their call for action that resulted in the Missing Adults Alert that was established in 2011 and the maintenance of state funding to the Alzheimer’s Association in this budget year.
Mistress of Ceremonies Frances Pantaleo took to the lectern and introduced the day’s speakers. Joining the rally were Senator David Valesky (D-Oneida) and Assemblymember Joan Millman (D-Brooklyn), chairs of the aging committees their respective houses; Mark Kissenger, NYS Department of Health Deputy Commissioner for Long Term Care; Dave Hoffman, NYS Department of Health Director of Chronic Disease Prevention and Control, and member of the National Alzheimer’s Project Act Advisory Council; John Cochran, NYS Office for the Aging Director of Intergovernmental Relations; and Aline Stone, Alzheimer’s Association advocacy specialist.
Honoring our Advocates of the Year
The Coalition also presented the Frank Carlino Award for its advocate of the year to Lydia Panaro and Harry Grier.
Lydia and Harry are a couple and made the choice to dedicate themselves to what our colleagues from the Hudson Valley/Rockland/Westchester Chapter describe as “everything Alzheimer’s.” Their strong and loving relationship is one important reason they are able to continue to do this work in the face of the disease.
Lydia is one of the hundreds of thousands of Americans that were forced into retirement due to her Alzheimer’s diagnosis. After earning her Ph.D. in comparative literature from NYU, she taught for 40 years at Manhattan College. The English professor gave her last lecture in 2006.
Her partner Harry earned an MFA from the University of Hawaii and did additional graduate work at Cornell University. After teaching and directing plays at Antioch College, Hawaii, Cornell and working with the NYC Opera, he was a motion picture assistant director. The Directors Guild of America member now has his most important role ever as caregiver to Lydia.
The award’s namesake, Frank Carlino, was one of the first outspoken young-onset advocates. He initiated one of the first early-onset forums in the nation to discuss Alzheimer’s publicly, testified before Congress and touched the lives of everyone he encountered before losing his fight with the disease. This award is given annually in his memory.