Area residents play a key role in nationwide advocacy to overcome the disease

Few families escape losing a loved one to Alzheimer’s disease. One in ten Americans age 65 and older has the disease, and every 65 seconds someone in the United States develops Alzheimer's. It’s the only top-10 cause of death that cannot be prevented, cured or even slowed.

But there’s good news due in large part to the advocacy of people including a team from the Finger Lakes region. Ambassadors with the Alzheimer’s Impact Movement (AIM) — the advocacy arm of the Alzheimer’s Association — were on Capitol Hill June 19, meeting with elected leaders to request funding and legislation. Jim Gulley of Penfield, Candace Ryan of Canandaigua, Jane Adams of Irondequoit, Francisco Corbalan of Elmira and Bruce Holroyd of Greece presented a wish list that included a $425 million increase for federal Alzheimer’s research funding for 2019.

Everyone is affected in some way by Alzheimer’s and so it’s a cause everyone can agree on, said Ryan, an ambassador with her husband, Bill Ryan. Bill has lost loved ones to Alzheimer’s including his father, Francis Patrick Ryan. Bill said his dad —a World War II veteran who had a long career at Eastman Kodak — began showing signs of dementia in the late 1980s. Within a few years his dad needed home care. For the last five years of his life, Mr. Ryan needed full-time, nursing home care. He died July 30, 1999, at the age of 78.

Candace said their family needed help to get through the process of helping Bill’s dad. It was hard. The experience led them to their decision to make the Alzheimer’s Association their primary charity.

“So many families are dealing with this,” she said. “It’ a huge caring effort. And a lot of heartbreak.

“It’s scary,” she continued. “We don’t know what’s going to happen with the next generation. We want to be part of helping finding some of those answers through research. What’s the cure going to look like? What kind of treatment can we put in place to deal with the onset?”

Candace said she and Bill, along with so many others, want to do “whatever it is that will help families."

There are signs of progress. Recent findings reported June 21 by the Los Angeles Times detailed discovery about viruses and Alzheimer’s that could open new avenues for treatment. The findings, published in the journal Neuron, revived a suspicion first raised more than six decades ago. It told how scientists found higher levels of the human herpes virus in the brains of people who had both behavioral symptoms and neurological evidence of Alzheimer’s at the time of their death than in the brains of deceased donors who had no signs of dementia.

“It is a beautiful piece of work, but it is still an association,” said Miroslaw Mackiewicz, program director at the National Institute on Aging’s Division of Neuroscience in the report. Still, added Mackiewicz, by providing evidence for the virus’ presence and some hints at its possible role, “you have some way to start your experiments.”

If further research uncovers a key role of herpes virus in Alzheimer’s disease, “this would generate a lot of excitement because we have vaccines” against various strains of disease-causing herpes virus, said Mackiewicz.

Still, herpes virus may not play a direct role in Alzheimer’s disease at all, the authors of the new research acknowledge.

There are many possible explanations for why herpes virus levels were so high in brains affected by Alzheimer’s. But experts speculate that antiviral treatment might prove effective either way. Even if the abundance of herpes virus is a secondary phenomenon, if it’s contributing to progression of Alzheimer’s, then treating it still could be beneficial. Finding and treating people with a known risk for Alzheimer’s and who have high viral loads might make a difference, according to the report.

To learn more about the Alzheimer’s Association and how you can get involved with the upcoming Walk to End Alzheimer’s taking place in Canandaigua, visit https://bit.ly/2KBJTom