After losing his precious son Talin to brain cancer, Gerry Tye of Sydney, Australia took a leadership role in creating support and networking for the childhood cancer community, specifically for DIPG and childhood brain cancer during a critical period of growth between 2012 and present. Founder of the DIPG Research Group and administrator for DIPG Awareness for Family and Friends groups on Facebook, Gerry has helped provide a platform and networks for parents find help for their newly diagnosed children by tirelessly providing the latest information in research and clinical trials available around the world
Gerry is a DIPG parent and researcher, with degrees in psychology and health science amidst a varied engineering and computing career path. He lost his son Talin to DIPG just 13 weeks after diagnosis, which was shortly after Talin’s 6th birthday in July 2012. He worked closely with Paul Miller and Jo Bishop in the early days of the DIPG support groups on facebook, and Talin’s brain stem is being used currently with the CCIA (Children’s Cancer Institute of Australia) as a live cell line contributing to cutting edge studies in DIPG with Dr. David Ziegler and Dr. Maria Tosli and a breakthrough Astralian Clinical Trial in the 3rd and 4th quarters of 2021.
Early on with the facebook groups Gerry really took the reins in creating the DIPG Research group, which now encompasses and fosters an accumulation of cutting edge information and knowledge relating to childhood brain cancer and DIPG with stakeholders in the international community. It was created in response to the early growing conflicts and controversy on medical treatments for DIPG. Gerry expected the DIPG Research group to only have about 250 members before it grew into this world wide resource of over 3100 that has stakeholders from surgeons, clinicians, researchers, parents and interested parties. It covers dissemination of peer review medical research, complementary and alternative medicine, psychology related to DIPG and DMG.
He serves also a private group for parents to discuss and share the more intimate details of DIPG from their perspective for grief and support. Serving as an administrator on Paul Miller’s DIPG Awareness for Family and Friends group, he supports the focus on DIPG for his supporters and stakeholders in the research space, linking the communities.
Gerry reports, “Our groups have sadly grown to encompass roughly 3100 active members in DIPG Research, roughly 4500 in DIPG Support and roughly 1000 in DIPG Advocacy and over 700 in DIPG Parents and they are growing steadily. The Synergy within our groups have kept them going as we work together for a decent treatment for this terrible disease…”
From his location in Sydney Australia, he is fortunate to have administrators and moderators around the globe to continue working 24/7. “We all work forfree and are mostly DIPG parents who are invested in seeing another parent’s child survive this terrible disease when their child did not…”
Gerry is one of the Primary Facilitators with Adults with Brain Cancer at the Chris O’Brien Lifehouse Hospital and Brain Tumour Alliance Australia, BTAA.
“In my spare time and what is left of my sanity I teach Studio and Fine Art Photography…”
Research showcase 2021Australia Children’s Cancer Institute: