Michael Mosier Defeat DIPG® Foundation, a nonprofit whose mission is finding a cure for the deadliest pediatric brain cancer, DIPG (diffuse intrinsic pontine glioma), announced today the addition of a second chapter in Washington State, to its Defeat DIPG® Network: Vivian Rose Weaver Defeat DIPG® Foundation. Vivian Rose Weaver Defeat DIPG Foundation is founded in honor of Vivian Rose Weaver, a 3.5-year-old girl from Husum, Washington, who has been battling a DIPG brain tumor for nearly 3 months.
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 Pennsylvania as Addison Grace 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.
Vivian Rose Weaver was diagnosed with a brainstem tumor on February 1, 2018. With great bravery, 3-year-oldVivian has faced a number of difficult medical procedures over the past few months, including a biopsy and 30 rounds of radiation treatment that required daily sedation. Vivian’s family describes her as a smart, articulate, funny, sweet, thoughtful imaginative, and precocious little girl who is full of love for life and people. Fortunately, Vivian has been doing well and is virtually symptom free.
“Learning that our little girl has DIPG was devastating – a worst case scenario,” says Vivian’s mother Katie Weaver, who will serve as the Director of Vivian Rose Weaver Defeat DIPG Foundation. “We are launching a multi-pronged attack on this disease, through our prayers for God’s healing, by finding the most promising treatments we can for Vivian, and now through our efforts to raise fund for essential research for a cure.”
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, Olympia, and Weaver 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.
“Joining together with the Weaver family – who are in the midst of the difficult fight against this disease with their precious daughter Vivian – even further motivates our efforts and our urgency to find a cure for DIPG,” says Jenny Mosier, Executive Director of Michael Mosier Defeat DIPG Foundation. “After experiencing firsthand the cruel impact DIPG inflicted on our own children, we are laser focused on our mission to eradicate this disease.”
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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