Stopping the spread of Alzheimer’s

Stopping the spread of Alzheimer’s
© Greg Nash

Over the last six years, Trish and George Vradenburg have been working relentlessly to create a movement around Alzheimer’s disease. 

The couple ultimately hopes to eliminate the stigma associated with the condition and raise it up in the public discourse among other deadly diseases such as cancer and HIV/AIDS.

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With that, they hope, will come more money for research, increased clinical trials for treatments and, ultimately, an end to Alzheimer’s disease. 

“There is still a stigma with the ‘A word’ — like cancer was in the ‘50s and ‘60s; it was a death sentence,” George said recently.

The couple founded UsAgainstAlzheimer’s in 2010, and the group now consists of various networks aimed at connecting activists, researchers, faith-based groups, the pharmaceutical industry and other Alzheimer’s-serving organizations.

All told, the Vradenburgs have amassed an army of more than 3 million people, when counting those involved in their own group or affiliated nonprofits. 

After George’s lobbying, some world leaders have adopted a 2025 goal for getting a medication on the market that can treat or postpone the symptoms of Alzheimer’s.

George has worked as general counsel and top lobbyist at AOL, and before that, as the general counsel at CBS. Trish has been a writer on several TV sitcoms and also penned columns in the New York Daily News and Boston Globe, in addition to a romance novel, “Liberated Lady,” and two plays about her experience with Alzheimer’s disease.

Before launching their own organization, they worked within the Alzheimer’s Association for about eight years, founding an annual fundraising gala for the organization.

“We really did it because there was a lack of passion, a lack of urgency,” George said of starting UsAgainstAlzheimer’s.

“We raised $10 million in those eight years through the galas,” Trish said, “and it just wasn’t satisfying.”

The disease will kill more than 700,000 people this year, according to studies cited by the organization — which puts it on par with cancer and heart disease. And it will cost roughly $236 billion to treat in the United States alone. 

More than 5.4 million people have the disease in the U.S., which also affects the 15.5 million caretakers who look after them. 

The figures will soar in the coming years as the number of baby boomers 65 years and older grows. The probability of developing Alzheimer’s doubles every five years after 65. 

Yet, unlike cancer and heart disease, there are no medications available to prevent, manage, treat or cure Alzheimer’s, the most common form of dementia. 

Trish and George say that a stigma and fear about mental health disorders drives the lack of action.

“You won’t find it in obituaries, because people are still hiding out,” Trish said. “You know, you think, ‘Well, if you say that he died from losing his mind, then his whole life is worthless,’ and that’s how people will envision it.”

George added: “And you won’t find it in death certificates, because doctors will not say that people die from Alzheimer’s; they will say they died of pneumonia,” which makes counting the deaths accurately even harder. 

“Until there is something out there that people think they can do, they’re afraid to talk about it. There is still something with mental disease that people still identify as a stigma as opposed to a physical disease,” he said.

But there are cracks beginning to grow, and the call for action is starting to swell. For many, including the Vradenburgs, it’s a cause that comes from personal experience. 

Bea Lerner, Trish’s mother, was diagnosed with Alzheimer’s in the late 1980s, while Trish was a writer on the sitcom “Designing Women.” Lerner was dead within five years.

“I have no fear,” Trish said about meeting with lawmakers to request millions more in federal funding. “I figure, what can these senators do to me? Fire me? I don’t think so.”

She’s known for offering to wait outside congressional offices for as long as it takes for an opening to come up.

In a meeting with one lawmaker, she pressed on increasing the amount of funding for Alzheimer’s research.

“He said, ‘I’m not disease-specific; I don’t make decisions like that.’ I said, ‘Well, why were you elected if you can’t make decisions?’ and the crowd started edging away from me,” Trish recalled. 

A couple of nights later, she received a call from the senator, who she said uttered “my five favorite words: ‘You have worn me down.’ ”

The couple has sunk millions of dollars into the effort, promising that their own funds cover all of the overhead for Us-AgainstAlzheimer’s so that donations can go directly to helping the cause.

And it seems fitting that the pair, viciously fighting a disease that causes memory loss, has a house flooded with photos and mementos. 

In their Woodley Park estate, there are family photos set up right next to shots of concession speeches from Hillary ClintonHillary Diane Rodham ClintonQueer Marine veteran launches House bid after incumbent California Rep. Susan Davis announces retirement Poll: Trump neck and neck with top 2020 Democrats in Florida Former immigration judge fined, temporarily banned from federal service for promoting Clinton policies MORE and Sen. John McCainJohn Sidney McCainCan the presidential candidates please talk about our debt crisis? Michelle Malkin knocks Cokie Roberts shortly after her death: 'One of the first guilty culprits of fake news' Arizona Democratic Party will hold vote to censure Sinema MORE (R-Ariz.) in 2008.

In a stairway leading to the bedrooms, two pieces of pop art adorn the wall.

“Mom warned me about Republicans,” a thought bubble above a blonde woman in the style of Roy Lichtenstein reads.

Next to it is a man thinking: “Sure she’s cute — but a Democrat spells trouble!”

It’s a sense of humor — and sense of self — that George and Trish have about each other, respectively a Republican and a Democrat. 

However, Alzheimer’s disease, and a desire to rid it from the world, is bipartisan, the Vradenburgs say.

Fred Trump, the father of GOP presidential nominee Donald TrumpDonald John TrumpTrump conversation with foreign leader part of complaint that led to standoff between intel chief, Congress: report Pelosi: Lewandowski should have been held in contempt 'right then and there' Trump to withdraw FEMA chief nominee: report MORE, died from Alzheimer’s disease. Trump has said he supports more research on the disease but has offered no specifics. 

Clinton, his Democratic counterpart, has a plan that includes boosting National Institutes of Health (NIH) research of the disease to $2 billion and finding a cure by 2025.

Congress has boosted the amount of Alzheimer’s research investment at the NIH in recent years, but it still lags far behind other diseases.

In fiscal 2015, the NIH spent about $589 million on Alzheimer’s research, according to its data. The agency estimates that it will spend roughly $910 million in fiscal 2016. 

By comparison, the NIH has spent more than $5 billion on cancer research and $3 billion in HIV research funding.

The effort to boost Alzheimer’s federal research funds, George said, has been driven by Sen. Roy BluntRoy Dean BluntGOP group's ad calls on Graham to push for election security: 'Are you still trying?' Exclusive: Kushner tells GOP it needs to unify behind immigration plan The Hill's Morning Report - Can Trump save GOP in North Carolina special election? MORE (R-Mo.) and Rep. Tom Cole (R-Okla.), who chair the Senate and House appropriations panels, respectively.

By 2050, the cost of caring for Alzheimer’s patients could reach $1 trillion per year and completely devastate Medicaid and Medicare.

But there is hope: There are 17 drugs currently in late-stage clinical trials that could be out within the next five years if those trials are successful. 

By the end of the year, one medication will be out of final testing, and George will be pouring over the research on whether it might be effective.

Regardless of results, the quest goes on. 

With September serving as World Alzheimer’s Month, the Vradenburgs are hosting a summit later this month with a keynote from former first lady Laura Bush and awards being presented to House Minority Leader Nancy Pelosi (D-Calif.) and Sen. Kelly AyotteKelly Ann AyotteGOP fears Trump backlash in suburbs Trump makes rare trip to Clinton state, hoping to win back New Hampshire Key endorsements: A who's who in early states MORE (R-N.H.).

“When the American people put their mind to something, they can get it done. And they’re beginning to put their minds to this. It’s beginning to get talked about,” George said. “More and more politicians are talking about the personal impact on their own families from the disease.”