Barbara Cleaver Tilsner, 66; Co-Founded Group to Help Mothers of AIDS Victims

Barbara Cleaver Tilsner, who co-founded Mothers of AIDS Patients Los Angeles after her son died of the disease 20 years ago and who campaigned widely to increase AIDS research funding, has died.

She was 66.

Tilsner died Aug. 2 at Little Company of Mary Hospital in San Pedro of lung cancer. A nonsmoker, she had been diagnosed with cancer only two weeks before her death, said her stepdaughter, Julie Tilsner.

In 1984, Barbara Tilsner lost her gay, 26-year-old son, Scott Cleaver, to AIDS after nursing him through his final illness.

A hairdresser, she feared losing clients if she mentioned that her son had AIDS, so she told people he suffered from cancer.

“After my son died, I felt a burning need to talk about it and educate people about AIDS, but ... all I really wanted was another mother to talk to,” she once told The Times. “I kept feeling, ‘Where are they?’ ”

Eventually, she heard about an organization called Mothers of AIDS Patients in San Diego and contacted its founder, Barbara Peabody.

She also called AIDS Project Los Angeles, pleading for “another mother to talk to” locally. She was referred to Mary Jane Edwards of Rancho Palos Verdes, who had also lost a son to AIDS. After the two women talked, they formed Mothers of AIDS Patients Los Angeles, patterned after Peabody’s group, in 1986.

All three women were featured in a video documentary, titled “Too Little, Too Late,” about the organization they launched to help families struggling with the loss, discrimination and isolation associated with AIDS.

Tilsner, as president of the growing Los Angeles group, traveled widely in the U.S. and to Moscow talking with patients’ families and publicly pleading for education, tolerance and research about AIDS.

She participated in a gay and lesbian civil rights march in Washington and lobbied congressmen and presidential candidates for more money for AIDS research.

Tilsner also provided her own early photographs of the Cleaver family to photographer Linda Troeller for her collage “TB-AIDS Diary.” The work illustrates the effects on their respective families -- including discrimination -- of Troeller’s late mother contracting tuberculosis and Scott Cleaver being stricken with AIDS.

The collage won the 1989 Ferguson Award from the Friends of Photography in San Francisco and was exhibited across the country.

Tilsner was a native of Los Angeles and spent much of her adult life in Torrance during her marriage to Tom Cleaver, who is also deceased.

She is survived by her husband of four years, Herbert L. Tilsner of San Pedro and Ventura; a daughter, Gina Rogers of Huntington Beach; three stepchildren, David and Tim Tilsner of Ventura and Julie Tilsner of Long Beach; two grandchildren; and two step-grandchildren.

Services will be private.

The family has asked that any memorial contributions be sent to That All May Freely Serve, an organization to promote ordination of gays and lesbians in the Presbyterian Church, at 121 N. Fitzhugh St., Rochester, NY 14614.