15 January 2019
Illawarra Charity raises money to kick start research into a rare ovarian cancer
Rare Ovarian Cancer Incorporated (ROC Inc.) is thrilled to announce research will be commencing in January 2019 for a rare ovarian cancer (ROC) called Juvenile Granulosa Cell Tumour (JGCT).
A leading researcher for Granulosa Cell Tumours, Dr Simon Chu, from the Hudson Institute of Medical Research Victoria, Australia, will conduct research into this disease in order to find the mutated gene(s) that occur in JGCT.
CEO/Founder of ROC Inc. Ms Tasha Armour explains “previously there has been no research into this disease which means there have been no answers in order to move forward for treatments or clinical trials. Granulosa Cell cancers are recurrent in nature. The recurrences are generally chemotherapy-resistant and tend to be highly aggressive with a poor prognosis, hence the critical need to find ways to treat this disease.”
This research will be the world’s largest research for JGCT to date. Participants range in age at diagnosis from babies to adult women, including Australia’s youngest case diagnosed at 11 months old to the oldest diagnosed at 52 years old. This research has the potential to change the future for children and women all over the world and the vital information gained will also provide a diagnostic tool for patients who develop this cancer in the future.
Ovarian cancer is the most deadly of the Gynaecological cancers due mainly because there is no national screening test and the lack of awareness for the symptoms.
ROC Inc. has coordinated the whole project from finding the qualified researcher, making initial contact and corresponding to find the participants needed to be able to conduct the research. The initial aim was for five participants to be able to start the research, currently 15 are confirmed.
ROC Inc. gained its charity status on 7 February 2018 and is proud of this massive achievement in such a relatively short period of time.
The biggest challenge the charity now faces is raising the money needed for this vital research. However, rare cancers have seldom attracted grant funding through the National Health and Medical Research Council (NHMRC). The Medical Research Future Fund (MRFF), a recent initiative of the Federal Government, has been set up to support only clinical trials yet does not allow for basic research to lead these to these trials. In order to close this gap, ROC Inc. has set out to raise the money needed for the research through donations from members of the community, businesses, and fundraising events. To date $10,000 has been raised and is enough to kick off the research but ROC Inc. needs to raise so much more to be able to continue working towards a cure for this disease.
Five-year-old Neve will hand over the cheque to Dr Simon Chu on Thursday 17 January. Neve was diagnosed with Juvenile Granulosa Cell Tumour a rare ovarian cancer at only 11months old.
“I am so proud of what we have managed to achieve so far. The Board and the fundraising committee are all made up of volunteers in the Illawarra region, giving their time and expertise. “said Ms Armour. We would particularly like to thank our supports who have donated or participated in awareness rock drop (Facebook group Rock for ROC) and the generosity of Bendigo Bank (Oak Flats & Shellharbour) who recently donated $5000 towards our research goal. We also would like to acknowledge the support of FlyCorporate who have assisted with a flight to the HudsonInstitute, to finalise the trial parameters”
February is Ovarian cancer Awareness month and ROC Inc. will be hosting a major fundraising event at The Lakeview Hotel in Shellharbour, NSW on Saturday 9 February and celebrating the start of the world’s largest research for a rare ovarian cancer.