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Can Ilana Landsberg-Lewis keep her father’s AIDS cause in the spotlight?

Ilana Landsberg-Lewis insists her life has not felt scripted: ‘My parents views on things were very clear, but I never felt coerced and I never felt there was an expectation that I would follow in anyone’s footsteps.’

Chris Young/The Globe and Mail

The question seemed innocent enough: "Does anyone know a good eye doctor?" But this was no simple ask.

Six grandmothers, fresh off various flights from sub-Saharan Africa, had arrived at the Stephen Lewis Foundation, whose offices span the fifth floor of a wheezy, converted warehouse in Toronto's Chinatown.

Back home, the problems these women face are overwhelming and immense: AIDS is still the leading cause of death around the world for women 15 to 49 years old, and grandmothers shoulder the weight of the aftermath. They endure extreme poverty, mass eviction and even sexual violence (younger and older women are often targeted on the mistaken assumption that they don't carry the disease) as they struggle to raise children, often by the handful, who have been orphaned by the virus.

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The plan was for the grandmothers to fly on to Vancouver, where they would testify at a "people's tribunal" on Saturday, staged at University of British Columbia and adjudicated by (admittedly biased) judges such as Gloria Steinem. This bit of theatre was conceived to promote a crucial point: that the international community and its governments should fight for these long-forgotten women; that without them, all is lost.

The immediate problem, however, was far more mundane. The grannies needed glasses.

Without bifocals, it became clear, they would strain to read their testimonies and Ilana Landsberg-Lewis, the foundation's 48-year-old executive director, would have none of it.

"I could ask my doctor," one member of her staff offered.

"We need him to do it now and we need him to do it for free," Ms. Landsberg-Lewis said, pausing, in rare moment of repose, near the reception desk, dressed in one of the flowing dresses she favours. "If you're uncomfortable, I will speak to him directly if you get me the number."

And then she was off, down the hall, to meet the grandmothers over a takeaway lunch of braised oxtail and rice, washed down with cold pineapple juice from a can. The meal ended on a rousing note – a song composed by the grandmothers in Zulu as a tribute to their own tenacity ("You hit a woman, you hit a rock"). Sitting in a folding chair, Ms. Landsberg-Lewis tapped a sandalled foot, keeping time.

You don't say no to Stephen

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Icons of Stephen Lewis – veteran politician, famed broadcaster and rock-star diplomat – are everywhere at the foundation. His face is on the flyers at the front desk. More photos of him, on his travels across Africa, ornament the walls. He continues to chair the board of the organization, which still bears his name.

But behind her father's spectre, it's Ms. Landsberg-Lewis who actually holds the reins. Under her tenure, the foundation has morphed from a wisp of an idea floated around her kitchen table 10 years ago into a non-governmental organization with a staff of 27 that has disbursed $72-million to support more than 300 grassroots groups fighting the devastation of AIDS in 15 African countries.

The foundation prides itself on keeping administrative and fundraising costs to 10 per cent of its budget. It aims to empower African women – not bureaucrats – to implement their own solutions to fight AIDS, which include kitchen gardens to feed their families, home-based health care, microcredit grants and music therapy to help them cope with loss.

"Everybody knows and adores Stephen Lewis. People think he's a Canadian hero and assume he's been running the place," says Mary Coyle, one of the longest-serving directors on the foundation's board. "Actually, she's been running the place."

There is no argument from Mr. Lewis, who describes himself as "a happy addendum" to the foundation. "I have graduated into the ether and I love it."

But Ms. Landsberg-Lewis – a mother of two young boys, a former labour lawyer who spent 10 years working in New York for the United Nations on women's rights – has happily shunned the spotlight until now. She jokes that she finds the idea of anyone writing a profile about her "revolting," agreeing to be profiled as a sacrifice for a cause.

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(As a child, she was painfully shy. "Whenever there was a crowd, a party at the house or people from the NDP over, Ilana would disappear," recalls her mother, journalist Michele Landsberg. "I would find her later reading a book alone behind some tree.")

"We never feel it's the Ilana show. For somebody who has such a leadership position, she's not afread to be emotional and has a real sense of humility," says Alexis MacDonald, the foundation's first hire, who now runs external relations.

The problem is this: For the past few years, donations to the Stephen Lewis Foundation have levelled out to about $10-million a year. Ms. Landsberg-Lewis worries that the recession has pushed AIDS off the radar. Every month, she receives 100 to 200 proposals for new programs the foundation cannot afford to fund. She would like to boost the money currently raised to $15-million or $20-million in the next five years. And so an organization that has "never even done a cocktail party" is now looking at new ways to raise funds, tapping into Bay Street, staging concerts and nudging Ms. Landsberg-Lewis a little more into the spotlight.

"This is one of the greatest calamities ever to befall human beings on this planet and it's one of those moments where you've just got to do something," she says.

These are, of course, echoes of the phrases her father used when he served as United Nations Special Envoy for HIV/AIDS in Africa, a time when he was "spending day after day with death, visiting countries that were graveyards and hospitals that were morgues."

A few years into the job, on a family holiday in Costa Rica, his darkness was palpable. "I've seen him feel sad, angry, incredulous, outraged and pained. This was different," Ms. Landsberg-Lewis says. "We asked him whether there was something to be done that could ameliorate the depth of his own angst."

The answer came in the form of a phone call from her father a few months later, asking her to help launch the foundation.

"I heard the intensity in his voice. There was no hesitation. Not for one millisecond. This was Stephen and this was my father and you don't say 'no' unless you have a really, really good reason."

At the time, she didn't. Ms. Landsberg-Lewis relished her work, but she had just given birth to her son Zev and was on maternity leave from her job at Unifem. It was the spring after Sept. 11, 2001, and she recalls holding her newborn in a park near her Spanish Harlem apartment and the Cloisters Museum, watching a group of boys chase each other in a game of tag. One of them took off his shirt and wrapped it around his head like a turban.

"The other boys went berserk and started screaming, 'Kill him. He's a terrorist.' I sat there with my four-month-old and thought, 'I am not raising my son in the United States right now.' " Nor did she have any idea how she would feel putting Zev in daycare when her maternity leave expired just a few months after giving birth. ("What kind of government believes in family values and then expects a woman to go back to work with a 12-week old?" she asks.)

A few months later, she was back home. "I have fallen about one millimetre from the tree," she concedes.

Be anything. Just not a Tory

Ms. Landsberg-Lewis grew up in Scarborough. Her father was leader of Ontario's New Democratic Party for much of her childhood. Her grandfather, David Lewis, simultaneously led the federal NDP. Her mother, a journalist, wrote about rape, prostitution and discrimination against women. Her brother, Avi, a documentary filmmaker, is married to author and activist Naomi Klein. She has a sister, Jenny, who has her own casting company.

"My mother tells this story of lying in bed when she was pregnant with me, not thinking, 'Please let this child have all their fingers and toes,' but thinking, 'Please let this child not turn out to be a Tory. She can be anything. Just not a Tory,' " Ms. Landsberg-Lewis tells me, this time sitting in her overgrown backyard, near Dufferin Grove Park. A cluster of Lego sits like a centrepiece on the table.

She bought the place, a 100-year-old semi, four years ago with her partner, Lorraine Segato, the lead singer of the Parachute Club, whom she met through friends. After a whirlwind courtship, the couple were married in 2009. ("You know that joke? 'What does a lesbian bring to a first date? A U-Haul.' ") Their ceremony was presided over by American playwright Eve Ensler, her friend and the author of The Vagina Monologues. Their wedding song was At Last, by Etta James.

Despite her pedigree, Ms. Landsberg-Lewis insists that her life has never felt scripted. "It was obviously a very ideological family, but that's because we were engaged in constant conversation. My parents' views on things were very clear, but I never felt coerced and I never felt there was an expectation that I would follow in anyone's footsteps," she says.

She is the first to admit – almost with apology – that she has followed firmly in her father's. He studied at the University of Toronto (so did she). He worked as a labour mediator (she as a labour lawyer). He worked for the United Nations (ditto for her). And now there is their shared work with the foundation.

Ms. Landsberg says the similarities between her husband and her daughter are striking. "It's unbelievable. … He can't stand the flavour of olives. She can't stand the flavour of olives. I always say she's a clone."

Which is not to say there isn't friction. "Of course, there is. Stephen gets impatient sometimes because Ilana can be insecure. Stephen sometimes thinks she should be more confident in her decisions, but it's always temporary," Ms. Landsberg adds.

For her part, "I have always felt an incredible kinship with my father," Ms. Landsberg-Lewis says. "During my deepest struggles and the deepest moments of my life, he's my go-to person."

For instance, when she decided to get pregnant through artificial insemination, she called on her father to help her select the donor. They met at a Korean Deli in New York and pored over three file folders that contained each donor's genetic profile. Father and daughter both chose the same candidate.

"I asked my dad, 'Why did you choose this guy?' " she recounts. He said: "He's great! He's left-wing! He's travelled all over the world! He wants to start an NGO! He has a social conscience! You know he's honest because he admits he had syphilis when he was 18, so you know he's not a liar.' "

Fighting the good fight

A few years ago, Ms. Landsberg-Lewis came up with the idea of linking concerned grandmothers in Canada to their African counterparts, raising solidarity (and funds) to support them. Her Grandmothers Campaign has since evolved into a network of 240 grandmothers groups across Canada that have raised $19-million.

Now, she also wants to tap more private-sector funds to raise awareness about AIDS and the foundation in Canada. It's something she acknowledges that she has been cynical about in the past. "I never thought I would ever get excited about anything to do with the private sector. It almost feels like a chemical impossibility," she says.

But several years ago, a group of female senior vice-presidents from a number of companies approached her and offered their help. In many cases, their companies weren't willing to send money directly to Africa – they preferred to focus on Canada. Frustrated, the executives offered to form a senior advisory council to explore other ways to help using their professional network, which turned out to be very powerful. That resulted in the foundation funnelling corporate donations toward fundraisers such as Hope Rising, a concert with the likes of K'naan, Alicia Keys and Annie Lennox.

Ms. Landsberg-Lewis hasn't ruled out following her father into another arena – politics – but its "nastiness" deters her. "Would I ever run? I just don't know," she hedges.

For now, her work is immune from such uncertainty. She can't think in terms of an expiry date. "I never go to bed thinking, 'What am I doing and why am I doing it?' I have never questioned that in my whole life."

Editor's note: An earlier version of this story gave an incorrect date for the Sept. 11, 2001 terrorist attacks. This version has been corrected.

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