Advocacy Update: AFTD Meets with NY State Senator Michelle Hinchey for FTD Week Announcement

AFTD advocacy update meeting with senator michelle hinchey image

AFTD staff and volunteers traveled to Albany on May 22 to meet with New York State Senator Michelle Hinchey as she recalled Senate Resolution 992 declaring September 24 – October 1 as FTD Awareness Week in New York and spoke to the importance of greater awareness and understanding of FTD.

AFTD CEO Susan L-J Dickinson and Advocacy Manager Matt Sharp were joined by Board member Kathy Newhouse Mele and AFTD volunteer Lt. Gen. Michael Basla. Also accompanying the group was Nancy Cummings, the program director of the Center of Excellence for Alzheimer’s Disease at Albany Medical Center and an AFTD volunteer.

The AFTD delegation met with Hinchey before the State Senate entered its afternoon session to thank her for her work on the FTD Awareness Week resolution. While visiting her office, the group followed up on previous discussions they had about policy issues and legislation to benefit people with FTD in New York, among other topics.

AFTD’s delegation then met with staff from the office of State Senate Majority Leader Andrea Stewart-Cousins, and thanked them for Stewart-Cousins’s previous meeting with AFTD volunteer Corey Esannason.

Later in the afternoon, the group observed the day’s legislative session from the gallery while Hinchey recalled the FTD Awareness Week resolution. Hinchey addressed the New York Senate and shared her personal experience with the disease – her father, the late U.S. Rep. Maurice Hinchey, had FTD/PPA – to underscore why greater FTD awareness is essential.

“The fight to bring FTD to the forefront of public awareness and to our policy discussions in the state legislature is a personal one to me,” said Hinchey. “My father passed away in 2017 from primary progressive aphasia and Parkinsonian syndrome. Our story started with a misdiagnosis, and an unrelenting partner in my mother, who wouldn’t quit until we found answers. She and I became [care partners], roles we never thought we would take on.”

Hinchey spoke of the grief attached to the FTD journey and the barriers to obtaining quality FTD care, such as prohibitively high costs and a dearth of long-term care options. The senator also characterized FTD for her colleagues, including how it affects the brain and what type of symptoms it causes, and highlighted the experience of State Senator Jeremy Cooney, a co-sponsor of the FTD Awareness Week resolution who lost his mother to FTD.

Hinchey then discussed the greater need for awareness among medical professionals and families and the value of resources that can explain FTD to families faced with a new diagnosis.

“When my father was first diagnosed, the Association for Frontotemporal Degeneration was an extraordinary resource for my family,” said Hinchey. “When you’re in that situation, you look for support; you look for people who can help you, who can rally around you, who can give you the answers that you need … so that you can provide the best quality of life for your loved ones, and know what you’re up against.”

Hinchey then recognized the AFTD delegation and thanked them for raising awareness of FTD and working towards an FTD-free future. Hinchey also thanked Emma Heming Willis for sharing her husband Bruce Willis’s diagnosis to help raise international awareness of the disease affecting him.

The New York State Senate has made the recording of the session available on YouTube. Click here to watch Senator Hinchey’s speech. 

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