Alzheimer’s Activists Put On a Show

If scientists find a cure for Alzheimer’s disease in the next decade,
George and Trish Vradenburg will share a good deal of the credit.

I wrote about the Vradenburgs and their Alzheimer’s advocacy for the magazine earlier
this year. They are
a mostly behind-the-scenes force that has helped galvanize policymakers and the dispersed
community of Alzheimer’s research scientists. When I met George and Trish, I was struck
by two observations. First, they are deeply in love with each other. (More on that
later.) Second, they are utterly audacious. As they explained over lunch, they were
prepared to spend their fortune, their time, and their considerable political clout
to find an effective treatment or a cure for Alzheimer’s by the year 2020.

If that goal weren’t so serious, theirs would be a laughable endeavor. Alzheimer’s
is one of the least understood of the major lethal diseases, and treatment research
is parsimoniously funded. The National Institute of Health spends more than $5 billion
a year on cancer research and around $3 billion each on cardiovascular and heart disease
and HIV/AIDS. But annual research on Alzheimer’s comes to only about $400 million.
Finding a cure by 2020 is about as likely as finding said cure at a scientific base
on the moon.

Do not tell this to the Vradenburgs, who are undeterrable. Unlike a lot of philanthropists
in Washington, they didn’t set out to adopt an orphan cause. Instead, like a lot of
activists, they took it on because they were personally motivated. You see, there’s
a chance Trish may develop Alzheimer’s. Her mother died of it in 1992. And if she
carries genes that trigger the disease, then she and her husband are running out of
time.

The Vradenburgs’ experience with Trish’s mother inspired her to write a semi-autobiographical
play,
Surviving Grace, which has been staged in New York and Washington. Over the years, Trish, a former
sitcom writer, has tinkered with the script and rewritten some acts. Last night, she
and a cast of friends performed a reading of the first act at the Phillips Collection,
where George is the chair. The play has become a centerpiece of their activist efforts,
and the show, which featured a VIP-donor dinner afterward, raised $150,000.

Playing the roles of the Trish-esque character
—an overworked television executive—and her ailing mother were the actress
Marilu Henner and the radio host
Diane Rehm, who helped Trish rewrite the first act. (“She took out all the curse words,” Trish
said.) George had emphasized that it was appropriate for the audience to laugh; this
is a comedy, even if it’s about Alzheimer’s.

The audience did laugh. One particularly memorable moment—for me, anyway: Rehm, walking
into her daughter’s unlocked apartment and declaring in her inimitable voice, “I could
have been a mass murderer!” She seemed to relish playing the role. Of the mother,
I mean.

The rest of the cast was a kind of Hollywood-meets-Washington ensemble, and a testament
to the Vradenburgs’ political and entertainment connections. Joining Henner and Rehm
were
Terry Moran, the co-anchor of ABC News
Nightline and a fellow Alzheimer’s activist; and
Dan Glickman, vice president of the Aspen Institute and the former chairman of the Motion Picture
Association of America. In supporting roles were
Meryl Comer, the CEO of the Geoffrey Beene Foundation Alzheimer’s Initiative;
Sandra Pinkard, the managing producer for the
Diane Rehm Show; and
Stephen F. Schmidt, a veteran Washington actor.

The evening had the veneer of a typical Washington fundraiser, until after the show
was over and it was George’s turn to take the stage. He revealed something I first
noticed when we met several months ago. He is profoundly devoted to his wife. It is
impossible not to notice. Even if you’ve never felt that kind of love, I think you
recognize it instantly in other people. He clung to Trish’s hand as he spoke, and
called her “the most beautiful playwright in the world.” This is not hyperbole, as
far as he is concerned.

But George is also angry. Mostly about how underfunded Alzheimer’s research has been,
but also for the way it “hides out,” he says, in the homes of families who are too
afraid or ashamed to admit their loved one has Alzheimer’s. That fire came out in
George’s controlled manner last night, when he exhorted the audience, one-third of
whom he estimated knew someone with Alzheimer’s, not to keep the disease in the closet.
“Dammit, get engaged!”

George, who is descended from passengers on the
Mayflower, has always struck me as a kind of subdued version of Larry Kramer, the famously
outspoken gay rights and AIDS activist. George would never throw fake blood on people
to get their attention—but, like Kramer, he’s interested in making people uncomfortable
if that’s what it takes to motivate them. And George is banging the drum for a disease
that, like AIDS in the mid-1980s, no one wanted to talk about, and that much of official
Washington was determined to ignore.

The Vradenburgs talk a lot about the AIDS movement as an analogy for what they want
to do now, in terms of forging a national strategy. And their work is paying off,
albeit not as quickly as they would like. The Obama administration has promised $156
million more on Alzheimer’s research over the next two years, and the new national
plan for Alzheimer’s now includes a target date: 2025. If not for the Vradenburgs’
strong-arming, and particularly George’s, that deadline wouldn’t be there, and the
national momentum for a cure would be stalled. The fact is, Washington likes plans,
but it lives by deadlines and by crisis. The Vradenburgs have figured that out—and
it may prove the secret of their success. I sure hope so.