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Tune In to DIPG Awareness Day
Rhode Island passed house resolution H804 recognizing May 17, 2018, as Diffuse Intrinsic Pontine Glioma (DIPG) Day. DIPG is the deadliest childhood brain tumor, but there is hope for progress in finding a cure by raising awareness, supporting expanded research, developing effective treatments and providing comprehensive care for children and their families.
For more than 40 years, treatment for DIPG (radiation) has remained the same, with no improvement in prognosis. In the past few years, however, better medical technology and increased access to tumor tissue have enabled researchers to make advances in the understanding of this disease. With federal grant money being scarce for rare pediatric diseases, progress in understanding DIPG has been funded primarily by private foundations, such as DefeatDIPG.org, TheCureStartsNow.org, DIPG.org, SmashingWalnuts.org, and many others created by parents that lost children to the disease.
DIPG parents and organizations all around the country are looking for May 17 media opportunities (radio, TV, newspapers, internet) to share their stories and build awareness. Rhode Island media specialists may contact parents Wendy and Dean Fachon at WendyF13@cox.net.