The mother-daughter duo helping to break new ground in brain cancer research
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It may be the leading cause of cancer death in children and people under 40 in Australia, but Canberra mother-daughter duo Milena and Zara Skepev are determined to change the devastating effects of brain cancer.
People are often drawn to a cause by a personal connection; whether they experienced a plight for themselves or know someone who did. Milena Skepev describes her pull towards brain cancer as more of a “fluttering sensation.”
“It was a gut feeling, telling me that this was the charity I needed to devote my time and energy towards,” she says.
That gut feeling and determination led Milena to launch The Australian Brain Cancer Foundation this month, which will aim to put the ACT on the map as a leading centre for primary brain cancer research and care. Together with her nine-year-old daughter Zara, Milena has also established the Zara Skepev Fund for Women in Brain Cancer Research, which will assist working mothers in brain cancer research at the Australian National University (ANU).
With a background in commerce and accounting, Milena’s previous roles have spanned from hotel and accounts management to wedding and function coordination, interior design, baby and children photography and even baking cakes. She is also a mother of three children.
It all began in 2017, when Milena attended her first BrainStorm Cancer Ball. She describes the impact of that night as “profound”.
“The devastating impact of brain cancer deeply touched me that night, so much so that it was an overwhelming feeling of needing to take action,” she says.
“Brain cancer is the leading cause of cancer death in children and people under 40 in Australia. Instantly, my intuition signalled that brain cancer would become the cause to dedicate myself towards. The following day, I reached out to Amanda Fintan, the organiser of the ball, to express my congratulations and admiration for her efforts and the successful outcome of the event.”
From Left: Milena Skepev, Professor Leonie Quinn, Amanda Fintan.
Over the years, Milena’s involvement with the charity grew as she attended events, made donations, volunteered and toured facilities such as the PACES Centre at the University of Canberra (UC), a rehabilitation centre for cancer patients. As she became more involved, her hunger to make a difference only grew.
She began attending support groups, which allowed her to hear patients’ stories and understand their situation better.
“It quickly became evident that financially stable individuals had a better chance of recovery and adapting to their new normalcy,” says Milena. “This to me signalled that we needed adequate funding to enable everyone to have the chance of recovery.”
Since there has never been a brain cancer foundation established in the ACT by a Canberran, Milena identified a critical gap in support for the local community. Through her continued involvement over the years, she realised there was a constant struggle in the ACT to retain the brightest minds in the field, to raise adequate funds for research and to ensure that the money raised directly benefitted local patients.
After touring the John Curtin School of Medical Research lab facility at ANU with Professor Leonie Quinn and establishing strong trusting relationships with the research team, she felt it was the perfect timing to fill this gap and address the frustrations voiced by the community.
Together with Professor Quinn, the aims and objectives of the Foundation were carefully crafted to enhance clinical care, highlight the wonderful facilities in Canberra and fund the world-class research being conducted in the ACT.
“The Foundation will achieve this by providing community awareness, supporting philanthropic ventures, and directly funding the scientific research urgently required to combat this debilitating illness,” Milena says.
Caption: Photo of the ABCF Board and Medical Advisory Committee. From Left: Dr. Peter Mews, Professor Leonie Quinn, Milena Skepev, Amanda Fintan, Colin McCulloch, John Irvine, Ursula Kohler, Dr. Hari Bandi, Dr. Kylie Jung, Naomi Mitchell, Dr. Ganes Pranavan.
The Foundation will also look to support clinicians caring for primary brain cancer patients, provide community access to vital information on primary brain cancer care and link community and consumer groups with clinicians and researchers.
Milena says The Foundation will mark its launch with a fundraising event in November and hopes to hold its first Gala Ball in 2024.
“Together, with the support of our community, we will strive to find a cure and bring hope to local families affected by this devastating disease,” she says.
It seems Milena’s passion and persistence has rubbed off on her daughter Zara. Together with her best friend Mila, Zara recently raised an impressive $14,325 for brain cancer research by launching their own earring line.
The girls spent six months baking, shaping and handcrafting 300 pairs of earrings, setting up a stand in Manuka on a sunny morning in March. It didn’t take long for the humble stand to become a community sensation, with crowds lining up to purchase the colourful creations.
Zara and Milena decided the money would go towards supporting working mothers in brain cancer research.
“This idea started when I expressed to Professor Quinn that Zara wanted to be a researcher when she grew up, but she was wondering about the sacrifices mothers often have to make in their professional lives to care for their children, and how she didn’t know how she would be able to be both a mother and researcher,” says Milena.
“Professor Quinn told me that over 90 per cent of the doctors and scientists in her research lab were in fact women and mothers.”
“It can often be difficult for mothers to return to work with the huge cost of childcare and other services, but our researchers are so essential, so we decided to put the money Zara raised towards supporting researchers and everything needed for researchers to transition back to work.”
Milena and Zara Skepev.
The ANU created a fund dedicated to Zara’s fundraising efforts, named The Zara Skepev Fund for Women in Brain Cancer Research.
Dr Olga Zaytseva, a researcher who is currently mapping brain cancer pathways and structures using fruit flies, has already been able to return to work earlier than planned thanks to the money Zara raised.
Last month, Zara received an Order of Australia Association Medallion for her efforts. She says she is “100 per cent” committed to doing a fundraiser every year, inviting a different friend to be her business partner on the adventure each time.
“I want to teach them everything Mum taught me this year about putting on a fundraiser and hopefully in a few years’ time, I will be able to do it without my mum’s help.”
In the meantime, her mother continues to work towards bringing hope to Canberra families affected by brain cancer.
“The road ahead may be challenging, but I am resolute in my belief that true contentment lies in creating a seismic shift and leaving behind a resounding, unequivocal positive impact.”
Feature image: Milena and Zara Skepev in the lab at the John Curtin School of Medical Research, Professor Leonie Quinn in the background at ANU.
