Lucy Jones is holding 4th annual fund raising dinner for neoroblastoma. Picture: Virginia Young. Source: The Daily Telegraph
Lucy Jones is holding 4th annual fund raising dinner for neoroblastoma. Picture: Virginia Young. Source: The Daily Telegraph
LUCY Jones is on a mission to help save the children she says have been forgotten and ignored by the pharmaceutical giants.
Those like her little girl Sienna Hoffmann, who was just nine months old when she was diagnosed with neuroblastoma - a rare and deadly cancer which affects an estimated 50 children in Australia every year.
Sienna lost her life in 2010 but in dedication of her memory, Lucy has raised more than $550,000 to help fund Australian research which may potentially discover how to prevent this devastating childhood cancer.
"Because it's a so-called rare cancer (neuroblastoma) doesn't attract much attention from corporates or any research dollars from the pharmaceutical companies," Ms Jones.
Every cent Lucy has raised has been donated by "everyday people" in response to her tireless doorknock appeals, direct marketing letters and fundraising dinners.
Lucy vows she will not stop until that dream is realised
Tonight (Thursday) Channel 9's Peter Overton and Jaynie Seal will co-host Lucy's fourth annual fundraiser - Sienna's Annual Frangipani Gala Dinner at Chowder Bay.
Lucy vows she will not stop fundraising until that dream is realised.
Neuroblastoma is a highly aggressive cancer which begins as a tumour in the abdomen and has a survival rate of 50 per cent.
The treatment used to fight the disease involves chemotherapy and radiotherapy which is invasive, highly toxic and a traumatising experience for a child and parents.
"Society hasn't done enough to prevent this happening to little children who don't have a voice," Ms Jones said.
"The situation has gone unnoticed for far too long.
"There is huge potential to change the situation because the disease can be prevented so children wont need to suffer through these nasty, devastating treatments."
A team of researchers at the world-renowned, Children's Cancer Institute Australia recently made an enormous discovery - identifying how neuroblastoma forms in the first place.
The CCIAs Professor Glenn Marshall says the team's study focuses on a gene, called Bmi1, which causes excess cells to survive after birth and can later transform into neuroblastoma.
"We have found that Bmi1 is "switching off" the body's natural cancer barrier, a protein called p53, leaving healthy cells susceptible," Prof Marshall said.
"From here, we plan to look at two things: developing a blood test at birth that can detect if these cells are present in the baby; and finding drugs that can "switch on" the p53 protein, or reactivate the cancer barrier.
"Although there is a lot more work to be done, this is the first step in what could be an extremely rewarding breakthrough for childhood cancer."
For information and donations visit www.neuroblastoma.org.au
