Second Annual Cancer Hacker Open – A Golf Outing Benefiting The ChadTough Foundation

The Hoogendoorn family entered its second annual Cancer Hacker Open with one goal in mind — to raise money, awareness, and support for those suffering from pediatric brain cancer.

Ami Hoogendoorn is mom to Emerson, a 7-year-old little girl with diffuse midline glioma, a brain tumor similar to DIPG. Instead of ending her year of kindergarten happy and healthy, Emerson slept for hours on end, was plagued with headaches, and eventually told her mom she was “seeing two of things.” At just 6 years old, Emerson and her family received the devastating news: Emerson had a tumor that was putting so much pressure on her brain that her spinal fluid couldn’t drain and her life was in danger.

The days that followed Emerson’s diagnosis at Helen DeVos Children’s Hospital in Grand Rapids, MI contained a series of doctors, massive surgeries, and treatment. Emerson went through two brain surgeries and several months of chemo and radiation before she qualified for an experimental trial of a drug called ONC 201. Ami says, “ONC 201 has allowed Emerson to live as normally as possible. She doesn’t look like a little girl fighting something so horrible. She can go to school every day, participate in her hip-hop classes and piano lessons. Without the trial, her journey would have been significantly altered.”

The Hoogendoorns had heard of The ChadTough Foundation for years. But when they began this trial, they realized what an instrumental role the foundation had played in providing the awareness and funds that made this trial available to Emerson. Ami and Emerson even traveled to Washington D.C. to testify to the FDA on behalf of this trial, and the opportunity and life it has given to Emerson.

That’s why this year the Hoogendoorns, joined by Ami’s friend Abby who has a son fighting pediatric brain cancer, used the momentum from last year’s Cancer Hacker Open to raise money and awareness for The ChadTough Foundation, because “it’s helping our kids, too,” she says. Approximately 40 golfers attended, and numerous local and Michigan-based businesses donated, such as Mejier and Big Lake Brewing. They raised nearly $6,000 to donate to The ChadTough Foundation.

“I’ve learned as a parent through this journey that when things change, it’s an adjustment in what you are comfortable with and what is going smoothly. This diagnosis is so very strange, terrible, and heartbreaking. We feel oddly fortunate right now despite this terrible situation,” said Ami.

The Hoogendoorns dedicated their Cancer Hacker Open to ChadTough because they want to continue to fight for a cure to benefit other children with the heartbreaking diagnosis of pediatric brain cancer.

-Written by Alex Austin, a ChadTough Volunteer Writer