Michael Mosier Defeat DIPG Foundation, a nonprofit whose mission is finding a cure for the deadliest pediatric cancer, DIPG (diffuse intrinsic pontine glioma), announced today the addition of a chapter in Mechanicsburg, Pennsylvania, to its Defeat DIPG® Network: Addison Grace Defeat DIPG Foundation. The new chapter adds to Defeat DIPG Network’s existing presence across the United States, in Maryland, Washington, D.C., and Kansas as Michael Mosier Defeat DIPG Foundation, in Illinois as Anthony’s Avengers Defeat DIPG Foundation, in Texas as Connor Man Defeat DIPG® Foundation and in Washington as Avery Huffman Defeat DIPG® Foundation. The Defeat DIPG Network has raised over $2 million for DIPG research in 2.5 years.
The Pennsylvania chapter, which will operate as Addison Grace Defeat DIPG Foundation, is founded in memory of Addison Grace Holl. Addison was a fun loving seven-year-old when she was diagnosed with DIPG. She lived for almost two years after diagnosis before she passed away a month before her ninth birthday. In her short life, she touched many lives and her spirit continues to live on through acts of kindness. She was taken decades before she should have been, and her loved ones are determined to make a difference in the fight against DIPG. Addison’s mother, Kim Holl, will serve as the Director of Addison Grace Defeat DIPG Foundation.
Jenny and Mark Mosier created Michael Mosier Defeat DIPG Foundation in June 2015 to fund DIPG research and promote awareness of the disease, after the passing of their 6-year-old son Michael. With its geographic expansion and growth of existing initiatives, the Foundation expects to continue to increase its capacity to fund essential childhood cancer research.
In December 2017, the Foundation announced over $1 million in DIPG-specific research funding, in partnership with The ChadTough Foundation. Michael Mosier Defeat DIPG Foundation works with a preeminent Scientific Advisory Council of brain tumor experts that advises its Board of Directors on how to maximize its resources to fund research for a cure for DIPG. The Foundation will soon begin accepting grant applications for 2018, and expects to announce another round of funding before the end of 2018.
The Mosier, Gaskin, Holl, Huffman, and Olympia families will work to grow the already powerful base of support in each of their communities, and to honor and unite all children and families who have had to confront this disease.
“There is power in joining together with other passionate families who are similarly dedicated to finding a cure for this devastating disease,” says Jenny Mosier, Executive Director of Michael Mosier Defeat DIPG Foundation. “We have seen firsthand the impact DIPG inflicted on our own children, so we are laser focused on pushing the field forward so in the future kids will have viable treatment options and hope for long term survival.”
DIPG is the deadliest form of pediatric brain cancer, with a median survival from diagnosis of 9 months and a near 0% survival overall. DIPG typically strikes children between ages four and eleven. Because of its location in the brainstem where all motor activity is controlled, DIPG is inoperable. The disease progresses by taking over a child’s motor functions one-by-one, typically starting with vision and balance problems, before moving to partial paralysis, followed by the inability to chew, speak, swallow, move and eventually breathe – all of this while the child remains mentally intact.
For decades, treatment for DIPG has remained the same and has been ineffective. The entire amount spent annually on DIPG research – approximately $3 – 5 million – is less than 0.0005% of the total funding for cancer research. In just the past few years, due to better medical technology and increased access to tumor tissue, researchers have made real advances in their understanding of this disease. There is finally hope for progress in finding a cure.
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