Courage and Commitment: The Determination that Started a Movement

By Chelsea Bailey | March 18, 2014

Co-Founders Susie Zeegen, Susan DeLaurentis, and Elizabeth Glaser.

EGPAF

Confronted with her daughter Ariel’s death and the realities of her own HIV-positive status, Elizabeth Glaser resolved to start an organization to end pediatric HIV/AIDS -- but she knew she couldn’t do it alone.

“I knew the idea would only work if I could find people to help me do it,” Elizabeth wrote in her memoir, “In the Absence of Angels.”

So she reached out to two of her closest friends -- Susan DeLaurentis and Susie Zeegen -- who didn’t hesitate to join her quest.  What began as a kitchen table discussion about the need for advocacy and action to fight pediatric HIV grew into the Pediatric AIDS Foundation (PAF).

Together these three determined women brought pediatric HIV/AIDS to the forefront of national dialogue. In 1989, PAF hosted “A Night to Unite,” Washington, D.C.’s first-ever bipartisan HIV/AIDS fundraiser. The event brought together congressional members and policymakers from both sides of the aisle and urged them to set aside politicking for the sake of HIV-positive children and their families. “A Night to Unite” raised $1 million for HIV/AIDS advocacy and research--solidifying the Pediatric AIDS Foundation as a powerful presence in Washington, D.C.

Elizabeth, Susie, and Susan also brought their campaign to the steps of the White House, challenging the Reagan, Bush, and Clinton administrations to commit to helping children living with HIV.

In 1992, Elizabeth Glaser delivered a personal and moving speech about her own struggles with HIV/AIDS at the Democratic National Convention and urged an entire nation to take action.

“I believe in America, but not with a leadership that doesn't hold government accountable,” Elizabeth said during her speech. “I go to Washington to the National Institutes of Health and say, ‘Show me what you're doing on HIV.’ They hate it when I come because I try to tell them how to do it better.”

In a city of incremental change, our co-founders pushed presidents and legislators to prioritize HIV/AIDS, making the issue -- once a divisive political barrier -- a moral imperative. Because of their work, Congress has appropriated millions of dollars for fundamental pediatric AIDS research and clinical trials.

As they built political momentum on the east coast, the Pediatric AIDS Foundation also began sponsoring research initiatives in California. Because pediatric HIV was a new discipline, the co-founders hosted retreats called “think tanks” which would bring together scientists from different disciplines for a weekend to examine specific scientific questions, such as how to address opportunistic infections and HIV.

The retreats prioritized collaboration and openness, banning scientists from using presentations in favor of roundtable discussions and dialogues.  In the end, researchers would return to their labs invigorated, and ready to discover everything they could about pediatric HIV and AIDS.  

Elizabeth, Susie, and Susan had no way of knowing that their kitchen table pact, born out of frustration and desperation, would one day become an international nonprofit that has provided more than 18 million women with services to prevent the transmission of HIV to their babies.

“None of us knew exactly what we were getting into,” Elizabeth wrote. “But we knew it was work that was both essential and meaningful.”

Though Elizabeth succumbed to AIDS in 1994, Susan and Susie continue the fight against pediatric HIV. 

“Elizabeth’s courage gave us the courage to fight and help others,” Susie said. Susan agrees:

“Watching the organization grow, change, and be a successful and influential voice for mothers and children has given me great pride and amazement,” she said.  “Eliminating pediatric AIDS is no longer a dream. Fighting together, we can make it a reality.”

This women’s history month, EGPAF celebrates the three women whose determination and bravery started a movement on behalf of HIV-positive mothers and children everywhere. Elizabeth, Susan, and Susie prove there’s no challenge too big for courageous and committed women.

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