Susie Zeegen, Co-Founder

Fated to Save Lives

Elizabeth Glaser (then Elizabeth Meyer) and I grew up together in New York on Long Island. We were Brownies together.

Years later, I was working on my master’s degree in child development at UCLA, and my thesis was to create one of the original exhibits at the opening of the Los Angeles Children’s Museum. There was another young woman who was a teacher working on the project with me. One afternoon, we went outdoors to eat our lunch, and she asked, “Where are you from?”

I said, “Oh, I’m from this little town on Long Island that if you don’t know it, you don’t know it.” She said, “Oh my god; that’s how I always refer to where I’m from.” So I looked at her and said, “Betsy Meyer! I’m Susie Bernstein.” From that moment, she and I rekindled our friendship and had a stronger and closer relationship than ever. Years later, my husband and I became good friends with Elizabeth and her husband.

In fact, the night that Ariel was born in 1981, we were at the hospital with them, waiting for her arrival. Elizabeth had a very difficult delivery that evening. She hemorrhaged and was given seven units of blood postpartum that were, unfortunately, HIV-infected. Of course this was before anyone knew anything about HIV or AIDS and what was going to happen—until four years later when Ari, who had contracted HIV through Elizabeth’s breast milk, became sick.

After Ari died in August 1988, Elizabeth was determined to figure out how to save the life of her second child, Jake, who had contracted HIV in utero. Elizabeth and Paul were not public with her diagnosis and in order for her to do anything, she was going to need help.

One of my more exquisite memories was when Elizabeth came to me and said, “I want to start a foundation. I want to only focus on research—that’s the only way that we’re going to save Jake’s life. Would you be willing to help me? And don’t worry, Susie—I’m also going to ask my friend Susan DeLaurentis to do this with us. You won’t have to do very much work.”

Then Elizabeth met with Susan, unbeknownst to me, and said, “Help me. I want to start a foundation. I want to do research. But don’t worry—I’m asking my friend, Susie Zeegen, to help as well. She has all the time in the world. You won’t have to do much work.”

It makes me smile every time I think of that story because it was so Elizabeth.

When the Pediatric AIDS Foundation was born in 1988, Susan and I were the two outside faces and Elizabeth worked behind the scenes. We had our first fundraiser in Washington, D.C., in June 1989, at which time Elizabeth was still not public and sat in the back of the room. A Night to Unite was chaired by Sens. Howard Metzenbaum (D-Ohio) and Orrin Hatch (R-Utah) and raised a million dollars. From there we became a major force raising funds to research treatment for children with HIV.

The survival and good health Elizabeth’s son, Jake, who is alive and living with HIV, embodies what we hoped for all children when we started the Foundation. We fought to save his life, and we succeeded.
Watching the Foundation grow and change from those days—and be so successful and impactful—has given me pride and amazement. It has been exactly like watching my own children grow. I’ve always felt that when I was working full time for the Foundation—which was until about 10 years ago—I filled the role of a parent for the Foundation.

The biggest milestone that occurred over EGPAF’s 25 years was when the results of the Nevirapine trials were announced in 1998. Until then, our work had been all about funding research and researchers. But when Nevirapine was given to pregnant mothers in Uganda, we found that we could cut in half the transmission of HIV from mothers to children. That still left a thousand children a day being born with HIV—which was unacceptable—but it was the turning point.

After that, I went with several of the scientists to the Gates Foundation and got the first large grant to fund our Call to Action, which expanded EGPAF operations into Africa. We went from being national to being international. We went from being funders of research to being implementers of public health care and treatment. It was a sea change and the high point of my work with the Foundation.
I do believe that we can eliminate pediatric AIDS. I don’t think that it will be easy, but we are well on our way. Unfortunately, the world of 2013 creates even more challenges than those we faced in 1988. It’s more complex.

Still, I’m an optimist.

I read Elizabeth’s book, In the Absence of Angels, several times a year—because I have never stopped marveling at what she and Susan and I did. In my closet, I keep an 8 by 10 photo of Elizabeth, Susan, and me in 1990. And I not only look at it and smile, but often have a few words to say. I miss Elizabeth terribly every day. But my  memory of her and what she and I and Susan achieved—and lived—together is one of the most important influences on my life.