The Avery Huffman Defeat DIPG Foundation is committed to finding a cure for brainstem tumors known as diffuse intrinsic pontine gliomas (DIPG). Nearly every day one child in the United States is diagnosed with DIPG and another child dies from it. The Foundation seeks to make a difference and Defeat DIPG both by raising awareness of DIPG and by providing funding for research into effective treatments for DIPG.
There is nothing more tragic than a child being diagnosed with cancer. Thankfully, medical advances in the past 40 years have greatly improved the survival rates for children diagnosed with most types of cancer. But these medical advances have done nothing for children with DIPG. A child diagnosed with DIPG today faces the same prognosis as a child diagnosed 40 years ago. There is still no effective treatment and no chance of survival. 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. As a result, during the last few months of their lives, 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 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.
The Avery Huffman Defeat DIPG Foundation is a chapter of the Michael Mosier Defeat DIPG Foundation, the parent foundation based in Maryland that honors the legacy of 6-year old Michael Mosier, who also courageously fought DIPG, and is committed to the fight against DIPG.
With new medical technology and increased access to tumor tissue, there is finally hope that we can Defeat 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. We must broaden the coalition of supporters to battle against DIPG — a cruel disease that steals hundreds of young lives every single year.
By raising awareness, and increasing funding for essential research, we can make a difference. We can save lives. Join the fight.