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Woodstock woman, businesses partner for childhood cancer month
Starbucks has displayed multiple posters and photographs with information and statistics about childhood cancer as part of National Childhood Cancer Awareness Month, which runs through September.
Deb Fuller worked with Starbucks and Indepth Graphics & Printing owner Denise Graff Ponstein to produce the display. Fuller lost her daughter, Hope, more than two years ago to a rare cancerous brain tumor.
Since Hope’s diagnosis, Fuller has worked to increase awareness of childhood cancers and has made it her goal to improve research capabilities within the field.
“A lot of children’s cancers, you either get them or you don’t,” Fuller said, noting that prevention or early detection is not possible in most cases.
Fuller said childhood cancer research is lacking compared to other cancer research.
“It’s so painful [for a parent] that you just want to get on with your life,” she said. “It’s hard to keep that drive because there’s so much pain.”
While Fuller hopes to maintain the vigilance she has had since the diagnosis, even she wonders, at times, how much longer she can push for awareness and research reform.
In many cases, she said, researchers do not readily share information or potential breakthroughs due to grant funding being driven by authored studies by individual researchers. Fuller’s thought is that some researchers are unwilling to share progress out of concern that other researchers might use their information to complete their own studies, ultimately, leading to fewer grant dollars going to their own research.
This has a double-pronged impact, Fuller said. It means fewer medical breakthroughs, which translates to fewer fundraising dollars and less awareness.
“[Childhood cancer research] is vastly underfunded,” Fuller said. “We’ll really make some great strides for all kids if we continue to push.”
Fuller said collaboration is key, and said she typically tries to donate and support organizations that value collaborative research.
The DIPG Collaborative formed in 2011 as an association of foundations unified with the mission of efficiently funding and inspiring diffuse intrinsic pontine glioma cancer research in the hope of finding a wider cure for cancer. As part of an initiative of the DIPG.org Symposium in March 2011, more than a dozen foundations met with researchers and cancer experts from around the world in the hope of raising dedicated funds allowing for long-term protocols and registry data. To date, nearly $500,000 has been raised to fund innovative, dedicated DIPG research.
Fuller said it’s support of groups like this that will ultimately move research forward.
“We need more groups seeking collaboration, not the old model,” Fuller said. It’s easy to get entrenched [in the old model] and not share.”
