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 chapter in Gresham, Oregon, to its Defeat DIPG®Network: Levi Harden Defeat DIPG®Foundation. Today would have been Levi Harden’s fourth birthday. Levi passed away from DIPG in October 2019, at three years old, just two months after diagnosis.
The new chapter adds to Defeat DIPG Network’s existing presence across the United States, in Maryland and Washington, D.C. 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 and Vivian Rose Weaver Defeat DIPG®Foundation. The Defeat DIPG Network has raised over $7.4 million for DIPG research in less than 5 years.
The Oregon chapter, which will operate as Levi Harden Defeat DIPG Foundation, is founded in memory of Levi Harden, son of Jenica and Nathan Harden. Levi loved sports, and from just two years old he could play miniature golf, hit a golf ball across the yard, play baseball, shoot hoops for hours and throw football with a perfect spiral. Levi was full of laughter and love and adored his big brother Clayton and new little sister Erin who was born around three weeks before his diagnosis with DIPG.
“We believe the best way to honor our son’s memory is to continue his fight against the disease that took his precious life,” says Jenica Castillo-Harden, Levi’s mother who will serve as Director of Levi Harden Defeat DIPG Foundation. “We are committed to finding a cure for DIPG because we believe that every child deserves a chance to grow up. No family should have to hear their child’s doctor say, ‘there is nothing we can do.’ We know that together with our Defeat DIPG partners, we can change the future for kids with DIPG.”
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.
The Foundation, with its chapters, has announced over $7 million in DIPG-specific research funding, in partnership with The ChadTough Foundation. Two grants are also in partnership with SoSo Strong Pediatric Brain Tumor 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 Mosier, Harden, Gaskin, 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.
“It is an honor to stand side-by-side with other families who share such a deep passion and dedication for finding a cure for DIPG,” says Jenny Mosier, Executive Director of Michael Mosier Defeat DIPG Foundation. “The devastating experience of losing our own children inspires our work to improve the dismal prognosis of less than 1% survival for children with DIPG. By driving more resources to DIPG research, we are pushing the field forward to find treatments for these children.”
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.
Learn more about our new chapter at levidefeatdipg.org.