BOLD Infrastructure for Alzheimer's Act

Santa Monican Elizabeth Gelfand Stearns has spent years working to fight Alzheimer’s disease and the former Universal Studios executive recently helped champion a landmark bill that will allocate $100 million to fight Alzheimer’s disease over five years.  

Stearns, chair of the Judy Fund, helped pioneer a program that matches an Alzheimer’s activist with each member of the House and Senate to push for legislation that supports research and care. The Building our Largest Dementia Infrastructure for Alzheimer’s Act (BOLD) is the latest result of that volunteer network’s advocacy efforts.

BOLD will create a national public health infrastructure to promote early interventions and diagnosis for people in the early stages of Alzheimer’s, Gelfand Stearns said. The act will also fund education on reducing the risk of cognitive decline and improving or maintaining brain health.

It’s a historic bill that reflects how views on Alzheimer’s have changed over the past several years, she said. Recent studies have shown that a Mediterranean diet, exercise, sleep and addressing stress can slow the onset of the disease because of the link between brain and heart health.

It’s not until the last five years that we have actually recognized there are ways to detect early on and perhaps even do something about this disease,” Gelfand Stearns said. “There’s been a feeling that this disease was an inevitability of aging, but we know now it’s not. It has a beginning, middle and end, and needs to be treated like a disease.”

Gelfand Stearns said BOLD is a step toward the eventual goal of developing drugs that modify or cure Alzheimer’s. It’s the sixth most common cause of death in the United States, but the only disease in the top ten without such drugs.

“If we research and spend money like cancer did 30 years ago, we can create survivorship for Alzheimer’s disease,” she said.

BOLD is the latest in a series of bills that followed the National Alzheimer’s Project Act, which President Barack Obama signed into law in 2011 and was the first law to outline a national research and care strategy for the disease.

That was the same year the Alzheimer’s Association Ambassador Program launched. The Judy Fund has funded the majority of the program from the beginning.

“Legislators have said that the single most important thing in passing Alzheimer’s legislation has been the work of ambassadors,” she said. “They were in the home and federal offices of congressmen and congresswomen educating them about economic toll the disease is taking on America.”

Gelfand Stearns said she has become friends with many of the ambassadors because they share one meaningful thing in common: their loved ones have struggled with Alzheimer’s. The Judy Fund is named after Gelfand Stearns’ mother. She died in 2004, one year after Gelfand Stearns and her father started the organization.

The fund has since raise $8.5 million, with a goal of $10 million by 2020.

While Gelfand Stearns wields significant influence at the national level, she also works locally.

Elizabeth leads by example,” said Jackie Kouri, a former director of the National Alzheimer’s Association Board. “She personally meets with Congressional leaders to advocate for critical legislation, makes funding possible for vital research, chairs and spearheads local events.”

For the past two years Stearns has also had the largest team and was the largest fundraiser in the Alzheimer’s Association Walk to End Alzheimer’s Santa Monica, held annually in Tongva Park.  Funds raised a the Walk to End Alzheimer’s fund local support and educational programs, such as the monthly support group held at Welbrook Santa Monica. Support is also available to all those on the Westside through the Alzheimer’s Association’s 24/7 Helpline at 800-272-3900.

Gelfand Stearns has lived in Santa Monica for 25 years and connects her work on national legislation like BOLD to serving the city’s aging population.

“Santa Monica’s population is older than most cities and getting older,” she said. “The programs BOLD funds will educate older adults about what they can do to slow down or manage Alzheimer’s.”

madeleine@smdp.com

 

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