Michael Mosier Defeat DIPG Foundation, a nonprofit whose mission is finding a cure for DIPG (diffuse intrinsic pontine glioma), announced today that it is expanding from its headquarters in Maryland across the United States. The Foundation will now operate in Texas as Connor Man Defeat DIPG Foundation and in Washington as Avery Huffman Defeat DIPG Foundation.
In June 2015, Jenny and Mark Mosier created Michael Mosier Defeat DIPG Foundation to fund research for DIPG, the deadliest form of pediatric cancer, and to promote awareness of the disease. Before Michael Mosier passed away in May 2015 at the age of 6, he began raising money to fund DIPG research to help other kids who received the same diagnosis that he did. Over the past 12 months, between Michael’s fundraising and the Foundation’s work, the Mosiers have raised nearly $500,000 for research. By expanding across the United States, Michael Mosier Defeat DIPG Foundation expects to continue its rapid growth and increase its capacity to fund essential childhood cancer research.
Through their work for the Foundation, Jenny and Mark connected with Amanda and Brandon Huffman in Auburn, Washington, and Alexis and Peter Olympia in Houston, Texas. These families were unfortunately following the same path as the Mosiers, as each family had a child battling DIPG. Sadly, Connor Olympia passed away from DIPG in October 2015, and Avery Huffman passed away from DIPG in February 2016.
In the face of the devastating loss of all of their children, the Mosiers, Huffmans, and Olympias committed themselves to their common passion to find a cure for DIPG. With Michael Mosier Defeat DIPG Foundation established as an active presence in the DIPG community, the families decided that they could best further their common goal by working together. Michael Mosier Defeat DIPG Foundation will now operate in Washington under the trade name Avery Huffman Defeat DIPG Foundation and will do business in Texas as Connor Man Defeat DIPG Foundation. The families expect to grow stronger through their geographic diversity, and they will work to expand the already powerful base of support in each of their communities.
“The shared nightmare of watching your child deteriorate day-by-day as they suffer from this disease creates a strong bond between DIPG families,” says Jenny Mosier, Executive Director of Michael Mosier Defeat DIPG Foundation. “We feel a deep urgency to make a difference and defeat this disease that stole so much from our child and family. It is unacceptable that children diagnosed with DIPG have no treatment options. We are privileged to be working with the Huffmans and Olympias who inspire us and are equally driven to find a cure. They will be a source of strength as we expand our efforts.”
DIPG is the leading cause of disease death for children under 10 years old, 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.
Michael Mosier Defeat DIPG Foundation, Avery Huffman Defeat DIPG Foundation, and Connor Man Defeat DIPG Foundation are dedicated to promoting awareness and finding treatments and a cure for DIPG through funding of medical research.
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