The Foundation

The Avery Huffman DIPG Foundation is dedicated and committed to finding a cure for the deadliest form of brain cancer in children: Diffuse Intrinsic Pontine Glioma (DIPG).  The Foundation seeks to raise awareness about DIPG, raise funds to support drastically needed medical research for treatments and a cure and to help support families whose child has received a DIPG diagnosis.

Diffuse Intrinsic Pontine Glioma, commonly referred to as pontine glioma, infiltrative brainstem glioma, or DIPG, is a rare terminal tumor of the brainstem that occurs almost exclusively in children. A pontine glioma occurs in the most delicate area of the brainstem (the "pons"), which controls many critical functions, including breathing and blood pressure. Its location, as well as the way it infiltrates normal brain tissue, makes it especially difficult to treat. There are about 300-350 new cases of DIPG diagnosed each year in the United States alone, usually in children under the age of 10.  More than 90 percent of children diagnosed with DIPG will die within 2 years of diagnosis, and most children will live only 9 months.  To make matters worse, these last few months of the child's life are excruciatingly difficult as the tumor interferes with essential bodily functions like breathing, swallowing, eye movement, and balance.  Most children with DIPG develop double vision and lose the ability to walk, talk, eat and drink. 

Amanda and Brandon Huffman established the Avery Huffman 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 ever heard of DIPG.

The Huffman family, with Avery’s sisters Alexandra and Addison and brother Cade, are committed to honoring Avery’s legacy while fighting like she did, to find a cure for DIPG.

The Huffmans formerly operated as a chapter of the Michael Mosier Defeat DIPG® Foundation (from May 2016-Dec 2020) under the DBA of Avery Huffman Defeat DIPG® Foundation within Washington state.  The Michael Mosier Defeat DIPG® Foundation was a separate 501(c)(3) public charity.  

In late 2020, the Huffmans decided to spin off from the Michael Mosier Defeat DIPG® Foundation and establish a separate West-coast-based public charity to carry out similar activities, while also adding in the ability to help also fund DIPG family support.

With new medical technology, advancements and increased access to tumor tissue, there is finally hope that we can develop treatments or find a cure for DIPG.  Medical researchers are learning more than ever before about these tumors, with promising new developments that could pave the way for new, effective treatments, and ultimately a cure.