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One Couple’s Battle Against Alzheimer’s
Comments () | Published June 4, 2012
The Vradenburgs work both sides of the political aisle—from Newt and Callista Gingrich (left) to Nancy Pelosi (right)—to advance their cause. Photograph courtesy of the Vradenburgs.

Whether they side with her or not, lawmakers don’t forget Trish. When Maryland senator Barbara Mikulski, who agreed to sponsor the bill, sees her in public, she points her finger and roars, “Alzheimer’s!” When Levin, who never signed on, sees Trish in the halls or at a party, he turns and walks the other way. Trish knows it’s a joke. But she also knows he gets her now. He knows what she’s after.

Lawmakers came to respect George, too. Even to rely on him. At a press conference recently introducing legislation to accelerate drug research through a mix of government and private money, reporters asked about patent law, clinical trials, and reducing the time it takes to get new drugs to market. The four members of Congress standing with George looked at one another, then at him. George stepped forward and answered the questions.

Meryl Comer, a fellow activist and one of Trish’s closest friends, sat next to her in the audience. Comer’s husband, who was a department head at NIH, was diagnosed with Alzheimer’s when he was 58. Comer, a former TV journalist, has cared for him at home for 18 years. She met George and Trish in year ten. They invited her to parties, saved a seat at every table. “They saved my life,” she says.

Three years ago, with a camera from ABC’s Nightline rolling, Comer read the results of a test that determined her risk for developing Alzheimer’s. She has one of two genes known to increase the risk of developing the disease. Her chance of getting Alzheimer’s is 30 percent higher than it is for someone without the genes. She may have inherited it from her mother, who has also been diagnosed and lives with Comer and her husband.

Meryl and Trish check in on each other. They talk about what they’ve forgotten or misplaced. But on the subject of the test, they part ways. Comer considers it a form of activism, a coming-out equivalent to being tested for HIV. If doctors knew more about who had Alzheimer’s, she says, they might be able to find treatments faster. So little is known about how the genes involved work—how much family history matters, what environmental factors might trigger the genes to start making surpluses of the deadly protein.

But Trish refuses to get tested. Not until there’s a treatment. If she’s dying, she doesn’t want to know.

At the press conference, the two women watched as George answered every question, nailed every point.

“There’s never been a leader of this movement,” Comer says. “Some claim it. But he is the one.”

On October 6, 2010, George and Trish, along with close friends, two senators, Sandra Day O’Connor, and a few reporters, filed into a large meeting room at Charlie Palmer Steak, steps from the Capitol. It was the Washington launch of George and Trish’s new political organization, started largely with their own money, called USAgainstAlzheimer’s.

George delivered a variation on his stump speech, but there was a new urgency, and anger beneath his normally placid eyes. “We intend to have an impact in the 2012 presidential campaign,” he said, “and in the races that year.”

The group has hired lobbyists and a public-relations team. It has invited every current presidential candidate to address Alzheimer’s on camera, and the three who did underscored, just as George does, the long-term cost of the disease. This is political combat of a kind that the national Alzheimer’s Association, as far as some of George and Trish’s allies are concerned, has too long avoided.

George and Trish, who are registered respectively as Republican and Democrat, are also spending their own money to fund political campaigns and candidates who support their goal of finding a cure or treatment. During the 2010 campaign cycle, they donated more than $150,000 to candidates of both parties, political-action committees, and campaign committees. They’ve put almost as much toward 2012 races.

The Vradenburgs are rich. But not that rich. George’s windfall from AOL was an eight-figure sum. Not nine or ten, like some of his former coworkers. (Once, upon entering the $46-million home of AOL cofounder Jim Kimsey, Trish turned to her fellow guests and asked, “Where’s the gift shop?”) George and Trish can’t buy a cure for Alzheimer’s. Nor can they rely on their own money to fund their cause the way Bill Gates has done with malaria, allocating hundreds of millions of dollars through his foundation. They have to leverage their money to encourage other private donations and then use political pressure to get the federal government to kick in the billions it will take to find new treatments and preventions.

They’ve warned their son and daughter, now 38 and 41, “We’re spending your inheritance.” They don’t mean it literally, but they don’t plan on leaving their amassed wealth for their kids. When George hears that some billionaire is leaving half his fortune to a cause, he thinks, “You’re down to $500 million. Thank you. You should be taking yourself down to $25 million or $50 million.”

George and Trish see their AOL money as the equivalent of winning the lottery—they didn’t earn it the hard way. They don’t own boats or planes. They have a home in Washington and an apartment in New York. But their wealth is dwindling. In the span of a few years, they have spent more than $6 million on Alzheimer’s and other causes.

They’ll make sure they retain enough to pay for their own health care, and neither will ever let the other go to a nursing home. But they don’t plan to die anytime soon. Instead, they’re setting a deadline. USAgainstAlzheimer’s intends to find treatments, prevention, or a cure for the disease by 2020.

If George is really honest, he knows this goal is probably unachievable. But he believes—always has—that without a goal there’s no progress. And if anyone’s doing the math—as George has done, many times—in 2020, Trish, by then entering her mid-seventies, would be in the window of high risk for developing Alzheimer’s. If she isn’t already there.

“I lost my BlackBerry again,” Trish says.

“So that’s why you’re not taking my calls,” George says. This time it’s his turn to bring the levity. But these moments of ordinary forgetfulness are uncertain harbingers. The branch rattling against the window again.

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  • Guest

    A great story and the Vradenburgs are doing generally good work, but the Comer quote states and the article insinuates that Mr. Vradenburg is the first/only/major leader in the movement and that recent successes such as the National Alzheimer's Plan were, in essence, solely his achievements. The first is a significant overstatement, the second patently false. Not to disparage the man at all (I greatly admire his work), but perhaps this article exaggerates his accomplishments a wee bit. For example: http://www.youtube.com/watch?v...

  • Siggimax

    Your story gives me more insite on how things began. I was not aware of the role that both Trish and George played in starting the The Alzheimer's Study Group. I was there when the program was launched, meeting both Gingrich and Kerry and sharing my story. I was there to meet and greet the cyclists, who rode across the country gathering signatures supporting NAPA, when they rode into DC and thankful that President Obama signed it into law in January 2011. I have been an advocate since 1997 and had the opportunity to attend the first and second Alzheimer's Gala in DC. After losing my husband to Alzheimer's in 1999 following a 13-year battle with Alzheimer's, I began a nationwide campaign to get a "semipostal" stamp issued for Alzheimer's disease. This stamp, simply by purchasing it at a premium, has the potential of raising millions for Alzheimer's research such as the Breast Cancer stamp. Working with Senator's Mikulski and then Clinton and Congressman Markey through the years, legislation has once again been introduced, fourth times in the House and third times in the Senate. H. Res. 351 and S. Res. 176, expressing the sense of the House and Senate that the U.S. Postal Service should issue a semipostal stamp to support medical research relating to Alzheimer's disease, needs co-sponsors to move it out of committee before the end of the 112th Congressional Session or it will die in committee once more and I will have to start all over. In January I began going door to door delivering my letter to all members of congress asking for their support. I finishing up in March. I am now following up with phone calls and emails. Still, response is very slow. PLEASE HELP! In October, I will walk in my 19th Walk to End Alzheimer's, and to date, I have raised $56,598 of the $65,694.50 that my Team HOPE has raised.

  • Mary Zamora

    Well, now I'm thinking this is what I'm looking at when I vote this fall ... this has to be a priority for our country!

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Posted at 11:15 AM/ET, 06/04/2012 RSS | Print | Permalink | Comments () | Washingtonian.com Articles