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ACTUAL—Aids Children Teaching Us About Love—is a grass roots organization founded in 1987 by a biological mother, a foster mother, and a grandmother of HIV-infected children who were receiving services at the Infant and Child Learning Center of the State University of New York (SUNY) Downstate and Kings County Hospital Center in New York City. Parents and caretakers were alarmed by the lack of available information about pediatric HIV/AIDS and frustrated by the scarcity of personal attention to the families and the children. They established ACTUAL to enhance mutual support among families, to provide information and education to the community, and to advocate for the needs of children and families affected by HIV/AIDS.

ACTUAL is an all-volunteer effort. Its leaders are representative of the people they serve: they are poor, they come from various minority groups, and many are immigrants; they are also strong, innovative, and courageous. A core group of approximately 12 to 20 members assumes various leadership roles depending on their skills and availability. They meet to plan and to organize every Friday afternoon in a small room at SUNY Downstate. Dr. Chantal Bruchez-Hall, an assistant professor of psychiatry at SUNY Downstate, is the group’s main professional advisor. The current leadership has revitalized the group and total membership has grown to 250.

Since ACTUAL was founded and is staffed by people who live every day with the reality of pediatric AIDS, the role they play within the hospital system and in their community is invaluable. Members reach out to people who are intimidated by medical experts and hospital bureaucrats and help them secure the best possible care and treatment for their children. They offer critical information about available medical treatment and services. They support families in the clinics and in the nearby community facing difficult practical decisions and devastating emotional choices. “When you first learn that your child has the virus, it’s so hard, you feel so bad,” says group member Roberta Brown. “I told this mother, ‘I know what you feel, I went through this myself. Take a deep breath and go.'”

Of the three original founders, one has died of AIDS, and the other two have suffered the loss of the children in their care. The elastic group leadership provides essential continuity and helps the group to survive and grow. On a daily basis, ACTUAL is successfully addressing the needs of some of New York City’s most needy—the children and adults trying to cope effectively and compassionately with the scourge of HIV/AIDS.