It took a trip to Capitol Hill, but Karen Henley finally feels empowered.
Henley, who was featured in Newsday's series on Alzheimer's disease in October, took her two teenage children to Washington, D.C., on Tuesday so they could tell congressional members how the disease has impacted their lives.
She and her children, Courtney and Brandon, care for Henley's husband Mike, who was diagnosed with early onset Alzheimer's at 36 years old and has been living with the disease for nine years.
Henley, of Westbury, made the trip along with several other Long Islanders as part of the national Alzheimer's Association's Action Summit. More than 600 people from around the country attended the three-day summit, highlighted by a day of meetings with congressional members and staff, pushing for support of Alzheimer's legislation and allowing caregivers to share their stories.
"The facts and figures are there all the time, but to tell them your story so they can learn what people are going through, that's the real push," Henley said.
The Alzheimer's Association says 5.3 million Americans have Alzheimer's, a number that's expected to surge to 16 million by 2050.
Henley, 48, who had wanted to take part in the annual summit for years, was inspired to finally go by the reaction she received from Newsday's series. She took with her a stack of letters to show congressional members how much her story resonated with others.
Her journey to Washington was not an easy one. She had to pay a home health care aide $300 to stay overnight with her husband for the time she was gone. It was just one of the hardships for caregivers she wanted congressional members to understand.
"I want the senator to know that this is not an old person's disease," she told an aide to Sen. Charles Schumer (D-N.Y.).
In addition to Schumer's staff, the group from the Long Island chapter of the Alzheimer's Association met with Sen. Kirsten Gillibrand (D-N.Y.) and Rep. Gary Ackerman (D-Roslyn Heights), their aides, and aides to Reps. Tim Bishop (D-Southampton), Peter King (R-Seaford) and Carolyn McCarthy (D-Mineola). Rep. Steve Israel (D-Huntington) and his staff were not available.
Chapter head Mary Ann Malack-Ragona urged officials to co-sponsor two bills that have been introduced that would increase Alzheimer's research funding and coordinate federal agencies handling the disease. Henley, along with the other caregivers, told of the emotional, physical and financial hardships they have endured.
"It costs the government less to keep him at home, but we have to fight tooth and nail for everything," Henley said.
The meetings had an impact: all of the officials they met with support the legislation, and agreed afterward to add their names on one or both bills. Israel is co-sponsoring one bill.
Gillibrand also introduced Alzheimer's patient and caregiver legislation following the series. "Newsday's series on Alzheimer's has helped shape the public debate and encouraged people in Washington to start listening," Gillibrand said.
Henley said she hopes to remain an advocate for those, like her husband, who no longer have a voice.
"This whole experience has been eye-opening and it gives you the power to make a difference," she said. "If you can get one person to get it, then everything is worth it."
A push to pass two Alzheimer's research bills
The Alzheimer's Association went to Capitol Hill Tuesday to push for the passage of two bills that have been introduced in both the Senate and House.
The Alzheimer's Breakthrough Act would authorize $2 billion per year in research funding for Alzheimer's disease at the National Institutes of Health and establish the disease as a research priority at the National Institute on Aging. On Long Island, this bill is co-sponsored by Sens. Charles Schumer (D-N.Y.) and Kirsten Gillibrand (D-N.Y.), and Reps. Gary Ackerman (D-Roslyn Heights), Tim Bishop (D-Southampton), Steve Israel (D-Huntington), Peter King (R-Seaford) and Carolyn McCarthy (D-Mineola).
The National Alzheimer's Project Act would establish an inter-agency Advisory Council to create a coordinated National Alzheimer's Disease Plan to address government efforts on Alzheimer's research, care, institutional services and home and community-based programs.
On Long Island, this bill is co-sponsored by Schumer, Gillibrand, Ackerman, Bishop, King and McCarthy.