On New York Alzheimer’s Advocacy Day on March 5, Alzheimer’s advocates from around New York State gathered at the Legislative Office Building in Albany to rally behind the cause and share their stories with lawmakers. During the opening ceremony, longtime Alzheimer’s advocate Catherine Wilson of Thornwood was presented with the Frank Carlino Award in recognition of her dedication to the cause of helping families living with Alzheimer’s and other forms of dementia. A proclamation honoring Wilson for her service by Rep. Nita Lowey was also announced.
In the early 2000s, Frank Carlino of Cornwall, Orange County, became the face of Alzheimer’s at a time when people with the disease did not speak out about it. He shared his experience living with Alzheimer’s in a variety of public settings – including testimony before Congress in 2000. Carlino’s work led to the establishment of the Alzheimer’s Association’s Early Stage Task Force, and he started the Alzheimer’s Coalition to Inform Others Now Coalition with Dr. Larry Force from Mount Saint Mary College. Diagnosed when he was in late 50s, Carlino lived with Alzheimer’s for several years before his death from lung cancer at age 67.
The Frank Carlino Award celebrates his visionary spirit and is given yearly to recognize an advocate who exemplifies the qualities of dedicated perseverance and creativity that help people with Alzheimer’s and their families.
Wilson became involved in advocacy after serving as her mother’s primary caregiver and losing her mother to Alzheimer’s disease. She was a corporate accountant making around $120,000 when her mother was diagnosed. After she became her mother’s primary caregiver, the lack of respite care made it impossible for Wilson to remain in the corporate world. Eventually, she had to become a bookkeeper and work multiple jobs, causing her income to drop to barely more than $30,000.
She emphasizes how the illness forces caregivers to become very isolated.
“You can’t get out the door; when you are caring for someone who is housebound, you become housebound yourself,” said Wilson. “You’re talking about people in the prime of their lives who are disappearing from our communities because they’re caring for someone with Alzheimer’s.”
Wilson has shared her experiences with lawmakers, extensively lobbying federal and New York State representatives for the Alzheimer’s Association on behalf of Alzheimer’s victims. She was invited to speak at U.S. Sen. Hillary Rodham Clinton’s conference on the economic impact of caregiving for disabled individuals and dementia victims, and has testified on the financial abuse of mentally disabled individuals and Alzheimer’s patients in the legal system before the New York State Senate Judiciary Committee and Gov. Andrew Cuomo’s Moreland Commission on Public Corruption.
In 2014, Wilson’s efforts resulted in a change to Delta Airlines’ global passenger booking system to accommodate individuals with disabilities traveling with caregivers.
President and CEO of the Hudson Valley Chapter David Sobel said the award was much deserved. “As executive director of the Hudson Valley chapter, where Frank Carlino lived, it gives me great pleasure to present this year’s award to a Hudson Valley advocate,” he said. “Working with Catherine holds us all to a high standard.”
To learn more about the Alzheimer’s Association, call 80-272-3900 or visit www.alz.org. To learn more about programs and services offered locally, visit alz.org/hudsonvalley.
