For the first time in history, at least 20 states will recognize May 17th as Diffuse Intrinsic Pontine Glioma (DIPG) Awareness Day, to raise public awareness of the deadliest childhood brain cancer. DIPG is the leading cause of childhood death due to brain tumors and typically strikes school-age children. The “DIPG Across the Map Initiative,” organized by Michael Mosier Defeat DIPG Foundation, coordinated families and foundations across the country to elevate awareness of this devastating childhood cancer.
As a result of the DIPG Across the Map Initiative, Governors in the States of Arizona, Connecticut, Georgia, Illinois, Iowa, Kansas, Kentucky, Maryland, Massachusetts, Michigan, Mississippi, Nebraska, Nevada, Pennsylvania, Virginia, Washington, and Wisconsin issued Proclamations establishing DIPG Awareness Day as May 17, 2017. In Louisiana, Tennessee, and Texas, DIPG Awareness Day was established through the legislature. Additional states still have requests under consideration.
“We thank the Governors and legislatures that have established DIPG Awareness Day on May 17, 2017 for their strong leadership. Through these Proclamations, they are giving a voice to children who are unable to advocate for themselves. Recognizing this devastating disease is an important milestone in the quest to promote awareness of one of the leading causes of disease death for our children,” says Jenny Mosier, Executive Director of Michael Mosier Defeat DIPG Foundation, “We have been honored to work with DIPG families, foundations, and advocates across the country on the DIPG Across the Map Initiative, to honor all of the young children who are fighting this cancer or have lost their lives too soon after brave battles with DIPG.”
The DIPG Across the Map Initiative started after Governor Larry Hogan established Maryland’s first-ever DIPG Awareness Day on May 17, 2016 through the effort of Michael Mosier Defeat DIPG Foundation. The date was selected because it fell anniversary of the passing of six-year-old Michael Mosier from Bethesda, Maryland, for whom the nonprofit organization was named. Following Governor Hogan’s issuance of the 2016 Proclamation, a Pennsylvania nonprofit, Aidan’s Avengers, also succeeded in establishing May 17, 2016 as DIPG Awareness Day in Pennsylvania.
On the heels of this recognition in Maryland and Pennsylvania, on September 1, 2016, Michael Mosier Defeat DIPG Foundation launched the DIPG Across the Map Initiative. The project had two central pillars: (1) by banding together to advocate for the same day in multiple states they would be able to gain more momentum and draw even more attention to DIPG on a unified awareness day, and (2) while every family and advocate should use their own personal story to urge their state government to adopt DIPG Awareness Day, the proclamations we seek should not be child-specific to ensure they include and represent all children who have faced or are facing this disease.
DIPG Awareness Day falls during brain tumor awareness month. Brain tumors are now the leading cause of childhood cancer death for children under 19 years old. DIPG is the deadliest childhood brain tumor, impacting 200-400 kids in the U.S. each year, 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.
The Avery Huffman Defeat DIPG Foundation is a chapter of the Michael Mosier Defeat DIPG Foundation. Amanda and Brandon Huffman established the Avery Huffman Defeat DIPG Foundation in honor of their 7-year-old daughter, Avery Hayden Huffman, who bravely battled against DIPG for 7.5 months before passing away on February 16, 2016. Like many families who learn of their child’s diagnosis, it was the first time the Huffman family had heard of DIPG.