Megan Bugg

By ALLISON SELK

Shaw Media correspondent

Megan Bugg has raised over $600,000 to support three different research projects focused on alveolar rhabdomyosarcoma, a cancer she was diagnosed with at age 13.

Now 20, the Coal City resident is currently dealing with her sixth relapse of stage 4 alveolar rhabdomyosarcoma.

Bugg said after her initial diagnosis, 54 weeks of intense chemotherapy and radiation were over and entrance into remission, she began to read about the lack of funding for childhood cancer research.

“I couldn’t believe it when I found out that only 4% of federal funding for all cancer research was dedicated to childhood cancer research,” Bugg said.

She connected with and befriended other people her age who had childhood cancer. As some of them passed away, she said it motivated her to try and make a difference.

“It is still amazing to me that with childhood cancer being the No. 1 cause of death by disease in children that so many people don’t pay any attention to it,” Bugg said.

“It’s a nightmare, a living nightmare every day,” her father, Kent Bugg, said. “I would not wish this on anyone; that’s why we have to stop it.”

When she began her fundraising journey, Bugg’s goal was to support research that would result in less toxic treatments for kids with cancer. She knew firsthand the toll the treatments took on her own body after chemotherapy, and the fact that not much progress had been made in treatments over the years.

“In fact, if my dad would have had my type of cancer back when he was a kid, he would have been treated with the same chemotherapies I was treated with,” Bugg said.

Bugg’s first research project she fully funded — for $214,000 — was at Ann & Robert H. Lurie Children’s Hospital of Chicago. After that, the doctor put her in touch with Dr. Charles Keller from the Children’s Cancer Therapy Development Institute in Portland, Oregon.

Bugg said, “CC-TDI is doing incredible research on sarcoma cancers and once I spoke with Dr. Keller, I realized that he is our best chance to find better treatments and maybe even a cure for childhood sarcoma cancers.”

She traveled to meet Keller, visited the lab and knew this was what she wanted to support. Bugg has fully funded one project for $215,000 for a drug called Entinostat and currently works to raise $233,000 to fully fund a second project focused to repurpose existing U.S. Food and Drug Administration-approved drugs for use in the treatment of her type of cancer.

“I have raised about $210,000 for this project, so I’m almost there,” Bugg said.

“She’s passionate and not afraid to talk and advocate for herself. She’s created a network across the country and many generous people and organizations have stepped up,” Kent Bugg said. “She’s quiet and shy, but she found her voice.”

Early in her advocacy Bugg said she met with legislative representatives in Illinois to advocate for childhood cancer research. Rep. David Allen Welter, R-Morris, invited Bugg to the floor of the Illinois House of Representatives where she said a resolution to recognize her and the importance of funds for childhood cancer research was unanimously passed. She also spoke in front of the U.S. Capitol building at CureFest.

“My friends and I will keep talking until someone finally listens,” Bugg said.

His daughter wants to make a difference for other people, said Kent Bugg. “I don’t know how to express how proud I am of her.”