Governor Jay Inslee officially declared May 17th DIPG Awareness Day. For the Avery Huffman Defeat DIPG Foundation, this is one more step in their mission to end the monster that is DIPG.
What is DIPG?
According to the Defeat DIPG Foundation website, “Diffuse intrinsic pontine glioma (DIPG) is a brain tumor found in a part of the brain stem called the pons. The pons controls essential bodily functions such as heartbeat, breathing, swallowing, eye movement, eyesight, and balance.”
“DIPG affects children almost exclusively,” the website continues. “Approximately 200-400 children in the United States are diagnosed with DIPG each year. These children are typically between the ages of 4 and 11. DIPG accounts for roughly 10-15% of all brain tumors in children.”
The Local Fight to Defeat DIPG
We spoke to Brandon Huffman to get more insight into why having May 17th declared DIPG Awareness day is important, as well as check in on other recent and upcoming events.
DIPG Awareness Day
Auburn Examiner: How many years now has the 17th been declared DIPG awareness day?
Brandon Huffman: The first DIPG Awareness Day in Washington was on May 17th, 2017. We established the Avery Huffman Defeat DIPG Foundation in May of 2016 and worked over the next year to get Governor Jay Inslee to proclaim May 17th (for 2017), as DIPG Awareness Day in the state of Washington. He has since proclaimed it each of the last two years since.
AE: What can folks do to mark May 17th and help raise awareness?
BH: Share Avery’s story. Share the story of other children fighting DIPG. Or those who have bravely fought it. Unfortunately, the Auburn/Lake Tapps community has had too many children diagnosed with DIPG in the last decade, abnormally large for any one region. Many families, in one extension of another, have been affected by it.
AE: What will the Huffman family, and the Foundation be doing on the 17th to mark the day?
BH: What will you/the Foundation be doing on the 17th to mark the day?This year, we will be at Avery’s brother Cade’s baseball game- one of Avery’s favorite places to be was at the baseball field, watching her brother play, and spending time with her family. Cade’s team, Untouchables 13U, has special “AveryStrong” jerseys, in gold (to recognize Childhood Cancer) with grey writing (to recognize Brain Tumor Awareness month) and #brAvery on the jersey’s as well as special hats with the letter A and a grey ribbon, that they will be wearing that evening in honor of Avery and DIPG Awareness Day.
AE: Does May 17th have a special meaning to the DIPG community?
BH: May 17th was chosen by the founders of the Michael Mosier Defeat DIPG Foundation, by Mark and Jenny Mosier, Michael’s parents, as that was the day, in 2015, that he passed away from DIPG. Mark and Jenny not only head the MMDDF, but that is the parent foundation of the Avery Huffman Defeat DIPG Foundation. They have also become dear friends of ours as we both fight back to honor our children who fought this horrible disease.
AE: What other states are marking the 17th as DIPG awareness day?
BH: To date, Washington is one of 11 states that has either received a Gubernatorial Proclamation or Permanent Establishment by Legislature. The other states are Arizona, Colorado, Florida, Kansas, Kentucky, Maryland, Idaho, Illinois, Louisiana and Ohio. In addition, there are 19 more states where it is pending either with their respective governor or legislature. See more here at DIPG Across the Map (https://www.defeatdipg.org/dipgacrossthemap/)
AE: During this year’s Auburn Clean Sweep event, the play area in Lakeland Hills park was dedicated as Avery’s Playground. What does it mean to you?
BH: It means so much. To have a permanent marker to honor Avery and have her remembered, by families and children and for generations, it continues to move us and know that even in her short life here on earth, she continues to be remembered and loved.
AE: Why Lakeland Hills Park?
BH: Lakeland Hills Park was the park she played at the most. It’s a short walk from our house. There were activities and practices for her older brother and sister that she would tag along to and play in the park the entirety of practice, then find a way to play on it even more. She could run around the park, she could play with our dog, she could have a great time. About a week before her diagnosis of brain cancer, we filmed a video of her climbing the monkey bars, where she climbed, dismounted and posed with a ”ta-da!” Two weeks later, she was in a wheelchair, partially paralyzed from her tumor.
AE: Darin Padur has been very active in seeing Avery’s Playground come to fruition. Tell me a bit about Darin and what he means to you, to Avery and to the foundation.
BH: Darin and his wife Shannon and their boys have been dear friends to our family for years. In fact, while Amanda had known Shannon because of our boys older boys, Cade and their son Jackson, being in the same class.
I didn’t meet Darin until our boys were on the same soccer team. And where did I meet him? At Lakeland Hills Park, when it was our day to take the boys to and from practice, so we waited for practice, started talking and our friendship grew. Our families would go away together, and as our boys continued to play sports together, Darin’s younger son, Landon and Avery would run around together at games, with the other siblings, but Landon and Avery also had a special bond.
From really, the evening Avery was diagnosed, Darin and Shannon rallied our community, our friends, our family (even the family away), to raise support for Avery in so many ways. Within hours of Avery’s initial discharge from the hospital, they started a meal train for our family during her radiation treatment, her infusions and for another two months after Avery passed away.
Broadway for brAvery
AE: Can you tell me a little bit about Broadway for Bravery – how many acts are in it this year?
BH: Broadway for brAvery was another event that was birthed by the Auburn/Lakeland Hills community. While Avery was sick and dealing with losing her ability to walk or use her right side, she still loved to swim. Being in the pool gave her the opportunity to move around freely and not feel restricted by a wheelchair. She would have radiation then she would have the opportunity to swim in the backyard pool of a family in the Lakeland community.
Their oldest daughter, McKenna Webb, was so impacted by Avery’s fight, that as she was a candidate for Auburn’s Outstanding Teen, her platform was to raise DIPG awareness and fight back. Shortly before Avery passed away, McKenna visited with Avery while she was at home on hospice and Avery was watching Shrek the Musical. Avery told McKenna how much she enjoyed watching musicals. After Avery passed away, McKenna almost immediately locked in a date and the Auburn Riverside ART center to debut Broadway For brAvery in 2017. We are now going on year three and the first two years have been phenomenal.
AE: Any numbers you’re excited to see?
BH: There are over 30 acts expected this year, but being a musical fan myself, I prefer to be surprised and not know many of the acts beforehand. I will say, Avery’s oldest sister, Alexandra, has done a number in each of the first two and will be a part of one again this year, so as her parents, we might be biased, but I think that is the one we’re most excited to see.
AE: Why is Broadway for Bravery important to the foundation?
BH: So many times, people think when you’re raising funds, support or awareness, it has to be done by adults. But some of the most successful events we’ve been a part of, that have benefited the foundation, have been done by teens and children. This entire event, every performance is done by either a high school student, a middle school student or an elementary school student. These kids, who range in age, do an act, sometimes putting their fear of being on stage, to the side, to honor Avery, to be a part of an event in Avery’s honor and to give back to our foundation. Being 100% student-led and performed, seeing the response, the attendance and the support raised, it’s absolutely incredible.