Sarah Harris overcame her natural shyness in order to lobby Congress for more Alzheimer’s research funds after her husband died of the disease in his 50s. Harris is one of many local older adults who have become outspoken advocates, devoting years to fighting diseases, striving for equal housing, and protecting the environment, among other causes. Photo courtesy of Sarah Harris

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In the 1990s, Sarah Harris was raising three children in Fairfax County when her husband was diagnosed (at age 53) with early-onset Alzheimer’s disease. In the five years he lived with Alzheimer’s, he lost the ability to hold conversations or complete small tasks, like turning off the television.

Harris’ experience inspired her to take action. Today, she is an Alzheimer’s Association ambassador to the Virginia legislature and U.S. Congress, advocating for more research funding and caregiver support.

“Knowing I can go into my nation’s capital and speak with senators and congresspeople — it’s an awesome privilege,” said Harris, who has been speaking up for her late husband and others affected by Alzheimer’s for 24 years.

Like Harris, many older adults have become advocates, activists, lobbyists, watchdogs or change agents. They see advocacy as a moral duty. They organize meetings, attend town halls, write emails and letters, make phone calls, circulate petitions, testify and even march in the streets.

They may not have specific expertise initially, but they are committed volunteers who are driven to make a difference.

Lobbying for cancer research

Liza Fues, now 60, was diagnosed with breast cancer at age 25 and again at age 30. American Cancer Society volunteers with similar experiences came to her aid and encouraged her to get involved.

Today, the Bethesda resident lobbies for access to treatment, funding for research, and laws that discourage young people from using tobacco products.

Advocacy does not require special skills, Fues said. “Just tell your story. Our voices are more powerful because we’ve lived it.

“Elected officials really do want to hear from us,” she added. “You’d be hard pressed to find someone who has not been impacted by cancer. Imagine if we could finally cure it — the lives that could be saved.”

Cancer survivor Linda Cookingham, 70, was diagnosed with stage three breast cancer at age 61 and given three to five years to live. She lucked into a clinical trial that saved her life.

Now, she lobbies elected officials for more research funding and access to biomarker testing. She also works to educate patients, healthcare providers and insurance plans.

She goes to Congress and the Maryland state legislature every year. In 2020, she helped overturn the governor’s veto of a tobacco tax increase.

“I will go a hundred times [to the legislature]. How can they say ‘yes’ if I don’t go [and ask for help]?” Cookingham asked. “I want to give cancer patients, survivors and their families a voice in public policy. We’re all one degree from cancer.”

The word lobbying has negative overtones to some people, but not for Cookingham, who has seen results from her work.

“We are [their] constituents,” she said. “When we see a veto overturned, a bill pass and budget increases — there’s tangible proof we are making a difference.”

Kayaker turned activist

When kayaking several years ago, retiree Tom Blackburn of McLean, Virginia, got fed up with trash in rivers and along shorelines.

“One day, I realized that being irritated was not fixing the problem,” Blackburn said.

He saw advocacy as part of the solution, became involved with the Audubon Society of Northern Virginia, gained insight into environmental issues, and found a platform.

Now, he’s president of the group. “Everyone should be an advocate for the things they believe are important,” Blackburn said.

“While sometimes people think that they are not important enough to make a difference, that is not actually the case. People arguing for change can make a big difference, especially for environmental issues. People have a moral obligation to advocate to protect and preserve their world.”

Fair, affordable housing

Growing up in Detroit in the 1950s and 1960s, Mary Paden watched a prosperous but segregated city torn apart first by urban renewal and displacement of African Americans, then by riots fueled by long-festering rage and white flight to the suburbs.

Today, along U.S. 1, the Fairfax County resident sees communities of color at risk of gentrification due to the county’s development policies. Chairing the South County Task Force for Human Services and the Fairfax NAACP Housing Committee, Paden advocates for fair and affordable housing.

A current challenge is to save two mobile home parks, Engleside Trailer Park and Ray’s Mobile Home Colony, create a more equitable and vibrant community, and prevent current residents’ displacement as the county plans denser development along the corridor.

“Making change is a powerful feeling,” Paden said. “Just know that change takes time, and get in for the long haul.”

Ending Alzheimer’s

Tom Cox, a retired Fairfax County executive, had what he calls “a textbook marriage” for 40 years. At age 67, however, his wife was diagnosed with Alzheimer’s disease.

He tried to care for her at home, but when she started to wander, he had to acknowledge that he could not maintain a safe environment, and moved her to a memory care facility.

“This is a horrible disease,” Cox said. “I don’t want anyone to go through it. If I can do anything to educate people about it, I will. People should not have to suffer.”

Although Cox knew nothing about advocacy, he took the Alzheimer’s Association’s online training and became part of “an army” lobbying state legislators. Together, they convinced the Virginia General Assembly to create a case management demonstration program at the University of Virginia — services that he believes “saved my life.”

Case managers help caregivers find healthcare, legal and financial advisors and make decisions. He also advocates for more Alzheimer’s research funding.

Talking to elected officials initially felt daunting, but “It’s all about just telling your story,” Cox said. “People are human. You’re one voice out of a thousand, but it’s very rewarding.”

Potomac resident Sue Wronsky started advocating in 2004, after coming to terms with her mother’s death. Sue was 28 with three young children when her mother was diagnosed with Alzheimer’s at age 63.

Sue, with her six siblings, experienced 11 years of what she calls “a brutal time, when [my] mother was robbed of a huge portion of her life…You never want this to happen to you or your family.”

Noting there’s no treatment or cure, she’s pushing for more funding to support people with Alzheimer’s and their caregivers, more dementia training for home care providers, and broader Medicare and Medicaid coverage.

Advocating is easier now than when she started. “I found my voice in time,” Wronsky said, and getting involved “opened my eyes” to government at work.

She has learned that “most elected officials want to do the right thing. They really want to hear from constituents,” she said.

“You don’t know until you try, and if you think they don’t care, that’s all the more reason to advocate. I’ve gained as much as I’ve gotten. If you are passionate about something, you have to use your voice,” she said.

Overcoming shyness

Sarah Harris, mentioned at the start of this story, calls herself “a shy little girl from Maine.” She initially found it difficult to discuss her personal experiences with her husband’s Alzheimer’s.

But she became determined to share her story and remove the disease’s stigma.

“Somebody had to speak for my husband, because things need to change. I don’t want other families to have to endure all that goes along with this disease,” Harris said.

Her advice to potential advocates for any cause: “Speak from your heart.”