Two Little Girls’ Legacies Help to Give Other Children a Fighting Chance

December 2019

By Linda Music, Volunteer Health Writer for the Charlie Teo Foundation

Alegra was like many other girls her age. She went to school.  She loved dancing, going to gymnastics classes and dreamt that, one day, she would marry her “boyfriend,” Paris. But Alegra will never get married because, at just six years of age, an aggressive brain cancer has claimed her young life. Her death came a mere 10 months after diagnosis.

Josie was four when the same cancer that killed Alegra, claimed her life too. Josie loved to go swimming with her dad and delighted everyone who met her with her infectious giggles. She passed away on 14th December 2019, 21 months after diagnosis. 

Pictured: Alegra (Left) and Josie (Right)

Diffuse Midline Glioma (DMG), previously known as Diffuse Intrinsic Pontine Glioma (DIPG), is not only the most aggressive childhood brain cancer with an average survival rate of just nine months but is also responsible for half of all brain cancer deaths in children.

Buried deep inside the brain stem, these cancers are virtually impossible to treat. Radiotherapy is often used to extend survival, but the therapy comes with severe side effects. Surgery and chemotherapy have not shown to improve survival rates.

With such poor prognosis, the importance of research into this hostile cancer cannot be overstated. To this end, Charlie Teo Foundation together with Little Legs Foundation have joined together to help fight DMG by funding research into this aggressive disease through the ‘Alegra’s Army Grant’.

This year’s grant of $326K has been awarded to Dr Matt Dun, Team Leader of the Cancer Signalling Research Group (CSRG) at the Hunter Medical Research Institute, University of Newcastle, whose research into DMG titled, “Harnessing the power from within” began when his daughter, Josie, was diagnosed with DMG in February 2018.

Pictured: Little Legs Foundation Founders and Professor Charlie Teo

As a cancer researcher, Dr Dun had previously focused his work on a range of cancers including acute myeloid leukemia (AML), T-cell acute lymphoblastic leukemia (T-ALL), and identifying new biomarkers for breast, colorectal and prostate cancers. However, after Josie’s diagnosis, Dr Dun discovered there was limited research into this cancer. Desperate to help his daughter and other children like her, Dr Dun turned his research focus to DMG in the hope of finding potential treatments that could slow or even reverse the cancer’s growth.

Charlie Teo Foundation’s Alegra’s Army grant funded by the Little Legs Foundation will provide valuable funds for Dr Dun to develop novel immunological therapies to help DMG patients use their own immune system to fight the cancer.

Josie and Alegra have passed. Too soon. Too young. But the commitment of dedicated researchers such as Dr Dun, supported by Charlie Teo Foundation and Little Legs Foundation, will mean that their legacies will ensure that one day, no child will have to suffer the same fate.

Read more about this research project.