Advocacy Takes Many Forms – Gretchen Spreads PBTF’s Mission via Pageant Competitions

“I finally found my community, and it was life-changing,” says Gretchen about finding the Pediatric Brain Tumor Foundation and participating in a Ride for Kids event in 2017 when she was 16. “It took me almost 12 years to find people that I could actually have a conversation with [about my diagnosis and treatment], and my mom and dad felt that way too. It was an immediate bond with these families that we were meeting for the first time.” 

Gretchen continues, “I was part of the Baltimore Ride for Kids and I was a Star there.” (Ride for Kids Stars are young pediatric brain tumor survivors who are featured as special guests at Ride for Kids events across the country.) “I got to go on this really cool motorcycle. It was so awesome!”

Gretchen, now 23 and a reporter for CBS 19 News in Charlottesville, VA, was diagnosed with an arachnoid cyst – a fluid-filled sac growing on her brain – at age 4. At the time, she had a persistent ear infection that her pediatrician feared might be the result of an MRSA infection. As a precaution, he sent her and her mother to their local Hagerstown, Maryland hospital for testing. After evaluation, the doctor there decided Gretchen should undergo a CT scan to help identify the problem. The results revealed an arachnoid cyst.

After receiving multiple medical opinions, Gretchen’s parents opted for an innovative new treatment to remove the cyst. In 2005, at the age of 5, Gretchen became the fifth patient to undergo this new surgery, and it was a success. Since that time, she has experienced minimal complications and has felt compelled to spread awareness about the impact of brain tumors and cysts on children and their families. “I feel like I have a servant’s heart now because of all I went through,” she says.

Gretchen’s drive to raise public awareness about the need for more childhood brain tumor funding and research led her to pageant competitions and outspoken advocacy for PBTF. “I was very motivated to compete, and every competitor needs a community service initiative,” Gretchen explains. “Because I was so fortunate to have found the Pediatric Brain Tumor Foundation, their mission became my mission.”

Gretchen has brought PBTF’s message to the pageant stage in several competitions, most recently Miss Virginia, but also Miss Central Virginia – which she won, and Miss Maryland – where she earned first runner up in 2019.

“What better way than going to the Miss Maryland or Miss Virginia stage to say, ‘Hey, you don’t know when this could happen to your family. You need to be prepared’,” Gretchen says. “If you take one thing away from what I am saying, it’s that you need to know about the Pediatric Brain Tumor Foundation. If you know somebody who is impacted, that is the organization to call.”

Gretchen continues to spread her message of hope and community, even beyond the competition stage. She advises families they sometimes must weigh the risks and benefits and take leaps when they are unsure. “It might not always feel okay in the moment, but sometimes you just have to do it,” she says. And the Pediatric Brain Tumor foundation can be there to provide support throughout the entire journey.

The Pediatric Brain Tumor Foundation – and its Ride for Kids program – is founded on community, compassion, and support. Thanks to this resource, families like Gretchen’s have hope. PBTF is committed to serving patients and their families through the funding of cutting-edge research, pediatric hospital programming, and a wide variety of emotional and financial support. At https://curethekids.org/resource/support-for-families/ families can find resources and community support for every stage of their cancer journey – from diagnosis through treatment and beyond.