Sue does not take a threat lying down. Danielle’s diagnosis kick-started a drive to take up the challenge, to solve the problem. ‘I’d never really taken much interest in diabetes, but when Danielle was diagnosed, I wanted to know everything’, says Sue. ‘I was determined to make a difference. I wanted to stop children dying at night.’
Sue is the first to acknowledge the unfortunate reality that people tend to focus on medical research and seek cures either when they become ill themselves or when it affects someone close to them. While she couldn’t take the disease from her daughter, Sue committed her enormous energy and considerable resources to tackling the illness. She got businesslike with diabetes, and it became her life’s work. The name Susan Alberti would become synonymous with type 1 diabetes research.
Raising funds for medical research was the first step in finding a cure, and Sue single-mindedly embraced this challenge. Sue believes that in the early 1980s, medical researchers weren’t very interested in diabetes because ‘it wasn’t a sort of fashionable disease to be researching’. She says, ‘There are other diseases, hideous diseases, that were attracting attention. The first thing we had to do was get the researchers involved’.
Sue joined a ‘giving circle’ created by a juvenile diabetes support group. She took every available opportunity to make money, honing the entrepreneurial skills she’d shared with her daughter in the days of cake stalls and car washing for pocket money. In 1981, with a handful of other women, Sue conducted fundraising activities as the Diabetes Youth Foundation (DYF), supporting the medical researchers she’d identified through her connection with Professor Len Harrison. She also set up the Susan Alberti Medical Research Foundation (SAMRF) to channel the money raised towards the appropriate research organisation.
‘Back in the early eighties, we did so many little fundraisers’, says Melissa Chavulak, Sue’s household manager. She remembers the bake sales that had begun as some fun for young Danielle: ‘I’d be cooking toffees and making cakes, all the stuff you’d make for fetes, to sell at Danielle’s stall. And Sue would sell the office car parking to people wanting to park for the footy. We probably only made a couple of hundred dollars but it all went to research. Every little bit helps’.
Always seeking more knowledge and the latest research news, Sue travelled to conferences to spread the word about the need for more investigation of type 1 diabetes—a regular destination was the United States, where the diabetes profile was more advanced than in Australia. It was during this period that Sue became aware of the Juvenile Diabetes Research Foundation International (JDRFI). Inspired by the achievements of this organisation, Sue, along with fellow parents Lorna Mellor and Geraldine Pack, brought together parents and children affected by type 1 diabetes in Sydney and Melbourne, and by 1985 the DYF had become JDRF Australia (JDRFA).
As national president of the new body, Sue became close to the chair of the JDRFI, international actress, dancer, philanthropist and business leader Mary Tyler Moore. A passionate advocate for diabetes research along with her husband, Dr S Robert Levine, Mary had struggled with the illness since she was about thirty years old. Sue considers Mary, who sadly passed away in February 2017, to be one of the greatest influences on her own personal leadership journey, and a woman whom she admires more than any other: ‘Mary kept her type 1 diagnosis quiet for a while. She was a little guarded, because she thought it may damage her career. Then she went public with her diabetes to show it doesn’t have to hold you back’.
Sue describes Mary as a person of action, not talk. She says Mary was also incredibly kind to Danielle: ‘Mary had a natural empathy with people and she knew what it was like to have complications. That’s why she was so sweet to Danielle’. Mary and Danielle ended up sharing an endocrinologist in New York, as well as a hairdresser. Sue recalls that while they didn’t catch up often, her daughter would occasionally bump into Mary, who was always friendly.
Sue says that Mary and Robert ‘loved one another so much. When she first met Robert, she’d been to see him in his capacity as a cardiologist. As she was leaving, he asked if there was anything else he could do, and she said, “Can you cure loneliness?” … And, of course, the rest is history. He married her and he adored her. They were such a team those two’.
Sue laughs as she remembers ‘moving up the room’ at JDRFI meetings over the years. She says that when she first met Mary, she ‘was always down the back of the room. I was the Australian representative, so not very important. And as I got more and more involved in the organisation and then was on the board for nine years, Mary insisted that I sit next to her at every function, so I moved from the back to the very front table!’
Sue says she doesn’t really know why, but she and Mary just hit it off: ‘We’d talk about girly stuff and shopping, we’d talk about handbags, shoes … She was the most down-to-earth person, no airs and graces. And funny! Funny on the screen and funny in person. She could see the funny side of everything’.
Sue recalls visiting Mary once at her apartment on New York’s Park Avenue: ‘It must have been about 100 squares that home. Now, I’m not scared of walking into a room, but I was really nervous! I didn’t know where to sit—there were so many antiquities! It was the most magnificent place. Even the man on the lift was wearing white gloves. I was nervous, but then Mary came out and she was so warm and welcoming. Her manner was, “Oh hello, so good to see you. Where have you been?” She made me feel so relaxed and comfortable in her home’.
Inspired and supported by her association with Mary Tyler Moore, Sue successfully ignited the Australian arm of the JDRFI into action. In her typical pragmatic fashion, Sue became involved in every detail of JDRFA operations and spread her influence around a number of areas, contributing her own money where necessary to get things moving. In the early days, this included negotiating office leases in both Melbourne and Sydney, paying the first two years rental in advance to put the organisation on the front foot.
As national president of the JDRFA, Sue was appointed chair of Gown of the Year, a charity-based event for young designers. Her small team honed their fundraising and event-management skills and channelled donations directly into type 1 diabetes research. The sourcing of prizes for the various raffles fell to Melissa, who recalls with a laugh the catwalk models, fashion students, and huge prizes wrapped in cellophane with thirty different colours of curly ribbon: ‘It was incredible! We had amazing nights at a restaurant called Rembrandt’s. Everyone had a ball’.
It was the era of big shoulder pads and even bigger hair, and up-and-coming fashion design students were awarded prizes if their work was voted best. ‘If you won Gown of the Year’, says Melissa, ‘you’d made it! You’d get a trip, a contract—it was a big deal’. Recalling one raffle, Melissa says there were ‘about 400 women there from Boronia and the surrounding suburbs. They loved it because it wasn’t an expensive night out and it was a lot of fun. If someone won a cup and saucer there would be squeals and screams!’ Everyone ended up with a brandy snap filled with mock cream, and the seeds of philanthropy were sown.
During the eighteen-year period when Sue was its chair, Gown of the Year netted more than $400 000 for type 1 diabetes research. With her gracious social manner and naturally generous spirit, Sue moved as easily handing out prizes at the suburban raffles, hosted by the Models and Mannequins Association, as she did advocating for work on diabetes on the international stage.
In 1992, Sue introduced the fundraiser Walk for a Cure to Melbourne’s Albert Park, taking the concept to Sydney two years later. Over the next decade, the walk became a major event in every state in Australia and a number of regional areas—according to Richard Jenkings, it took that long for people to really start paying attention to his sister. By 2008 the event had raised more than $30 million for diabetes research.
Perhaps Sue’s highest-profile achievement over her three decades as JDRFA president was the annual Gala Ball, which she hosted every August. Later known as the Signature Ball under Sue’s own foundation, these nights provided board members, institute donors and researchers the opportunity to highlight the important work being done. There is no doubt that creating and executing gala balls landed firmly in Sue’s sweet spot. Arranging tables, organising seating plans and working through the intricate details of décor themes all played to her natural talent in putting people together for a worthy cause.
‘Sue has always been a natural host’, smiles Melissa. ‘Back when we started [Walk for a Cure], Sue would never let anyone leave the walk hungry. She would have the spit roasts going and dessert tables. Everyone would walk around Albert Park Lake and then stay around eating and talking.’ What started out with feeding the walkers evolved in subsequent decades, as Sue gradually extended her influence to the leafy luxury of Toorak, the boardrooms of universities and football clubs, and Melbourne’s business elite.
Travel was a constant for Sue in the quest for answers and support for her cause. And with Angelo still committing the bulk of his time to Dansu Constructions, Sue typically travelled alone. On 17 June 1994, Sue stopped overnight in Los Angeles after a JDRFI conference in Texas. A lover of musicals, she recalls enjoying a show starring Glenn Close before returning to her hotel. In the middle of the night, she woke to the dramatic noise and terrifying sensation of an earthquake.
‘It was 4.17 a.m. I distinctly remember seeing the clock on the bedside table’, says Sue. ‘Everything was shaking and I could hear people screaming. I got out of bed and went to the door. All I could hear was everyone screaming, “Get out! Get out!” I was in my pink three-quarter-length nightie and had put on a dressing gown and a pair of slippers. A security man was shouting to me and he helped me get to the fire escape. Just after we’d gone down the stairs, the stairwell collapsed’.
Sue says that when she got outside, she and other guests were herded into a car park across the road: ‘At the hotel, the car park floors were collapsing and the water tanks on the roof exploded. I’d left everything behind in my room and the tanks exploded into the room I had been in only a few minutes earlier’. While Sue stayed in the nearby car park, she says that ‘A couple of people didn’t stay in the evacuation area and they were killed by falling glass. It was so sad. When the sun had come up and it was all over, I was able to go up on a ladder with the fire brigade and they got my suitcase. My room had been destroyed; the TV had smashed onto the bed. I lost my jewellery, including my engagement ring and wedding ring, but I was so lucky’.
Sue says, ‘In an earthquake you never know where to turn. Things are happening all around and there are no parameters. You don’t know which door to push and there is no-one who really knows. You are on your own’. Unbeknownst to her, that experience was a harbinger of the next decade of her life.