New York’s advocates paint D.C. purple at Advocacy Forum
New York brought one its largest contingents of advocates ever to Washington, D.C. in mid-June for the 35th annual Alzheimer’s Association AIM Advocacy Forum. More than 60 advocates from the Empire State learned about why Alzheimer’s disease is the most expensive disease in America and what government can do to ease the burden on families, taxpayers and society.
The culmination of Advocacy Forum is its final day, when advocates don purple sashes and swarm Capitol Hill to spread the message of why Alzheimer’s must be a national priority. This year, advocates their members of the U.S. Senate and House of Representatives to:
- A $425 million increase in Alzheimer’s disease research funding at the National Institutes of Health
- Co-sponsor the Building Our Largest Dementia (BOLD) Infrastructure for Alzheimer’s Act (S. 2076/H.R. 4256), creating a public health mechanism to combat Alzheimer’s.
- Co-sponsor the Palliative Care and Hospice Education and Training Act (S. 693/H.R. 1676), which would increase education, training and access to hospice and palliative care services across the country.
These may seem like weighty issues, but in the end, it comes down to supporting the 5.7 million American families impacted by Alzheimer’s disease. Families like Sarah Armisto’s. Sarah, a 22-year-old from Harrison, talked openly and courageously about her father’s diagnosis of Alzheimer’s disease and how the cost of his care decimated her college savings, forcing her to drop out of school. She’s worried about her own increased risk of developing Alzheimer’s disease as a result.
Roman Szul’s family was also impacted by Alzheimer’s. Roman, whose wife died from Alzheimer’s disease in hospice care at age 64, explained that his wife received good care while in hospice, but the Camillus resident knows that many long-term care facilities lack the awareness and abilities to provide palliative care services.
Mike Henley of Westbury was diagnosed with Alzheimer’s disease at age 36 and lost his battle 11 years later in 2012. Karen, his wife, and their daughter Courtney have made ending Alzheimer’s their mission by attending the Advocacy Forum each year. Karen is the ambassador to Rep. Kathleen Rice and has convinced the Congresswoman to support Alzheimer’s research funding and co-sponsor PCHETA.
Advocates met with legislative champions like Rep. Paul Tonko from New York’s 21st Congressional District. Tonko, the co-sponsor for the BOLD Act, offered to speak individually with legislators not committed to the legislation from New York to ensure that the bill’s final passage has the full support of Empire State representatives.
They also met with Western New York’s Brian Higgins (NY-26) and Chris Collins (NY-27). Though they are on opposite sides of the political spectrum, Higgins and Collins know that Alzheimer’s disease doesn’t recognize political parties. It’s not a red issue or a blue issue, but a purple issue.
Monday evening’s National Alzheimer’s Dinner had a decidedly New York flavor as well. MSNBC Host Richard Lui was the master of ceremonies for the evening. Lui will serve as emcee for the Manhattan Walk to End Alzheimer’s in October.
Broadway actress Alexandra Socha, who attends advocacy events in Albany and Washington with the New York City Chapter, was presented with the AIM Young Advocate of the Year Award. Socha, whose mother has Alzheimer’s, thanked her family for allowing her to pursue her dream of performing on Broadway.
“I can only stand in front of you all tonight because I have a platform,” Socha said in her remarks. “And I only have this platform because I have a career. And I only have a career because of my family.”
Advocacy Forum kicked off on Sunday afternoon with the Roll Call of the States, where advocates from all 50 states shared their delegation’s biggest advocacy accomplishment from the past year. Tonawanda’s Nancy Swiston, longtime advocate and Alzheimer’s Ambassador to Rep. Brian Higgins, represented the Empire State.
The Alzheimer’s Association AIM Advocacy Forum is the nation’s premier Alzheimer’s disease advocacy event. The 2019 Forum is March 31 to April 2 at the Washington Marriott Wardman Park. AIM, or the Alzheimer’s Impact Movement, is the advocacy arm of the Alzheimer’s Association.
