From the very first time they heard the word DIPG, Diffuse Intrinsic Pontine Glioma, a terminal form of pediatric brain cancer, the diagnosis that was given to their then healthy 6-year-old daughter, Avery, the Huffman family knew they were facing the battle of a lifetime.
They would soon intimately grow to know its full horror, its pain, and its heartbreaking destruction as they sat by helplessly watching their daughter succumb to the disease within a seven-and-a-half-month period, ultimately taking her last breath on February 16, 2016.
It was during this battle that their resilience to fight back only grew stronger. They made the promise to their daughter that they would give all they had to keep fighting for a cure so that other children and families wouldn’t have to go through this.
Defeat DIPG Foundation
In May of 2016, shortly after Avery passed away, the Huffmans joined forces with an existing non-profit organization also battling back. The Avery Huffman Defeat DIPG® Foundation, a dba name in Washington State under the parent foundation Michael Mosier Defeat DIPG® Foundation, was formed in the spring of 2016. From its inception in the spring of 2016 until late December 2020, the Huffmans operated and carried on their daughter’s legacy while also fighting hard for other children and families also facing this disease, raising needed funds for critical medical research to be jointly funded in connection with their Defeat DIPG® collaborative partners. The Huffmans’ loving community and support network attended events, championed DIPG awareness and continued to keep the fight to end DIPG front and center. During nearly five years of operating as a chapter of Defeat DIPG® named Avery Huffman Defeat DIPG® Foundation, they successfully raised over $710,000 for DIPG research.
The Huffmans passion to keep fighting has only grown- as their grief tightens and the damage and destruction of the disease continues to ravage children and their families- the battle to find a cure continues strong.
Avery Huffman DIPG Foundation
That passion was reignited during the worldwide pandemic of 2020 and in January of 2021, the Huffmans decided the timing was right for them to announce the establishment of their own independent, separate non-profit public charity in Washington State, with a new EIN of their own and a pending 501(c)(3), under the name Avery Huffman DIPG Foundation.
It is the newly renamed Foundation’s continued mission to find a cure for DIPG by supporting critically needed research, build awareness about DIPG, and also adding in the ability to support families who have received the DIPG diagnosis.
With a presence in the Pacific Northwest, ties in and around the West Coast, and a national following of Avery’s story, the Avery Huffman DIPG Foundation’srebranding and renaming comes near the five-year mark of Avery’s passing. Despite the pandemic of 2020, which led to the cancellation of major Foundation flagpole events, such as the annual “Be Strong, Go Gold” Gala, the Broadway for #brAvery show, the brAvery 7v7 Northwest Tour, and the Avery Huffman Wood Bat Classic, the Foundation raised nearly $40,000.
Continuing the Battle
The Avery Huffman DIPG Foundation has great plans for some new fundraising and awareness ideas moving into the future and are also excited about other local funding opportunities right here at home.
They have a dedicated board of directors who are established members of the community while also having a personal investment in Avery during her fight, who are each committed to the mission. Those board members include Darin Padur, the board treasurer, who established numerous events in support of Avery upon her diagnosis, Michael Jeremiah, the board secretary, who was a major resource for the Huffman family and whose father officiated Avery’s graveside service and Dr. Suraj Singh, who treated Avery as her radiation oncologist through Mary Bridge Children’s Hospital/Multicare.
Avery’s grieving parents and family aren’t finished telling her story, sharing about the destruction and horrors of DIPG or being a part of helping find treatments leading to a cure. They are deeply dedicated to continuing the battle to end DIPG so no child or family has to be told there is nothing they can do.
Brandon Huffman created the below playlist, songs that he listened to with and remind him or Avery.
About Avery Huffman: Avery Huffman was a beautiful 7-year-old from Washington who courageously battled DIPG for 7.5 months and impacted thousands of people worldwide with her brAvery, always AveryStrong during her fight.
About the Foundation: The Avery Huffman DIPG Foundation was established in 2016 by the Huffman family, Amanda, Brandon, Alexandra, Cade and Addison, to raise awareness and funds for research to find a cure for Diffuse Intrinsic Pontine Glioma and to honor the legacy of our daughter, sister and hero, Avery Hayden Huffman.
About DIPG: What is DIPG? Diffuse intrinsic pontine glioma (DIPG) is a brain tumor found in a part of the brain stem called the pons that affects children almost exclusively of which there is no known cure.