Susan DeLaurentis, Co-Founder
We were moms who saw a crisis
Elizabeth Glaser and I were best friends. We met when my daughter, Francesca, and Elizabeth’s daughter, Ariel, were just 2 years old. We met at the swing set and we became close friends right from that moment. We were at the same point in our lives—we were enjoying our first children; they were both toddlers; they were both girls.
Four years later, Elizabeth and her husband, Paul, were told by their doctor that the doctor told that Ari was not going to make it through the weekend because of her AIDS-related illness. In the midst of that devastating news, Elizabeth found me sitting on the steps outside the hospital, and she said, “I’ve got to do something about this.”
Ari lived another five months before losing her battle. After Ari died, Elizabeth’s attention turned to her young son, Jake, who, like Elizabeth, was also infected with HIV.
A couple of months later, Elizabeth called me and said, “I’ve decided. I really want to start a foundation to save Jake—but I can’t do it without you.”
I had really little kids at that point, so she added, “It’s not going to be full time—I have this other friend, Susie Zeegen; her kids are grown, and she’ll be able to devote a lot to this. So for you it will be a part time thing.”
Of course, I soon found out that there was plenty of work for all three of us.
I started doing research about what was being done—which was nothing. So Elizabeth and I met with pediatric scientists at the University of California, Los Angeles (UCLA) and after much counsel from other experts and leading scientists, we started directing funds to UCLA.
At that point, the government was giving us all these figures of what they said that they were spending on pediatric AIDS research. I started making calls to the National Institutes of Health, trying to track down more specific information. Finally, after months of pestering, they sent us a printout of their research, and it turned out that it was all being done with adults. Our scientific advisors reviewed all of the research and determined that none of it would help kids with their specific AIDS related issues.
It was pretty shocking.
That’s when we realized that we had to start working at the federal level, and we started going to Washington, D.C. We just followed our instincts. When we did our first pitches to members of Congress, we only had two or three sheets of paper to give them. We were clearly not professional lobbyists—but we had a compelling story.
At that point, Elizabeth was still private about her HIV status. So when we would walk into a room, she would say, “Don’t remember my name; just remember my story.”
That period of my life was so exhausting. I had little kids who I needed to be with, so I used to take the overnight flight from Los Angeles to Washington—I got the nickname Susan DeLaRedEye. Elizabeth would fly into D.C. ahead of me. When I would get to her hotel early in the morning, I would crawl into her bed and sleep for two or three hours. Then we would get up and start our day. We would jam in a bunch of meetings with senators and representatives. Then I would fly back to California that night.
What we accomplished in Washington was pretty remarkable. But we never took time to appreciate what we were doing because there was always so much more to do. When you think back now on the short amount of time that Elizabeth was involved in the foundation, it’s really remarkable to see the legacy created just through her personality—that tenacity and willingness to take a new approach, which I think still lives on in EGPAF.
The think tanks that we started with Elizabeth are a perfect example of that personality. We would have no more than 30 scientists, from all different disciplines, working together to answer a particular question, like how to address opportunistic infections. No one was allowed to use slideshows because we never wanted the room to be dark. We wanted the scientists to always be talking with each other in a more informal way than was the norm at a scientific meeting. We made sure the meetings were in a beautiful location, with delicious food and plenty of free time when they could discuss ideas with each other. And fun was always a big part of whatever the Foundation did.
I’ve had many scientists tell me that to this day that they continue to use that format. We really insisted on collaboration, insisted on openness. To us, how would you do it any differently? Our naiveté is what allowed us to make that happen.
The thing that I am most sad about is that Elizabeth didn’t live long enough to receive the benefits that came from her work. Although Elizabeth was on antiretroviral drugs for years, I remember sitting with her on her bed when the first protease inhibitor drugs were hand-delivered to her. It was too late.
But to see her son, Jake, survive and grow to adulthood because of those drugs that she fought for has been pretty remarkable.
As I look back on the 25 years since Elizabeth called me about starting a foundation, I find it interesting that—even though the geographic scope and activities of our little foundation has grown—the work that EGPAF is now doing in the rest of the world resembles so much the work we started. Our success was that we got up every day and looked at the problems that kept kids from getting treatment—whatever the problems were—and we worked to solve them.
I’ve felt in the last year or two that we’re closer to finding a cure for HIV than we’ve ever been before. Moving into the future, it is important that EGPAF doesn’t lose the problem-solving attitude that we began with. We were moms who saw a crisis and knew that we couldn’t sit by and let that crisis continue.