May is National Brain Tumor Awareness Month, but putting the malady in the public spotlight is a year-round mission for Amy and Ed McNicholas, of Chicago’s Beverly community.
The couple founded the John McNicholas Pediatric Brain Tumor Foundation four years ago after their son died of a brain tumor at age 15.
Amy McNicholas said they want John to be remembered for living his short life to the fullest, and they want to make a difference in the quest to cure pediatric brain tumors.
“Our goal is to leave this planet seeing improvements in patient outcomes, and that’s a big job when you think about the fact that in 30 years, we haven’t seen one new treatment protocol for this disease. So that’s a lofty goal,” Amy McNicholas said.
“Go Gray in May” events in the Chicago area — some of which have been held already — will benefit the foundation, McNicholas said, and each event will make a statement of its own.
“This part of the campaign is really geared at raising awareness. We use the term ‘inspire, enrage, engage.’ Awareness is great, but … for it to be significant, it has to be some kind of catalyst for change,” McNicholas said. “Our initiatives are really trying to push for people to do something.”
It begins with the children.
Students at Christ the King School in Chicago, John McNicholas’ former elementary school, are participating in “Change for Change” throughout May. Children bring in loose change, which is donated to the foundation, McNicholas said.
John was a sophomore at St. Rita High School in Chicago when he died. The St. Rita baseball team honored his memory during Saturday’s game against Brother Rice by wearing gray uniforms with John’s number, 10, and the letters “LLJ” for “Live Like John.”
“In terms of awareness and one closest to my heart, that is one,” Amy McNicholas said.
A partner of the John McNicholas Pediatric Brain Tumor Foundation, Live Like Leah, is hosting a 5K at 8 a.m. Saturday at The Skokie School, 520 Glendale Ave., Winnetka.
A number of restaurants in the Chicago area also are holding events or donating a portion of sales on various days to the foundation, McNicholas said. They include Fat Tommy’s (3031 W. 111th St., Chicago) on Tuesday (a flier from the “Live Like John Facebook page” must be presented), Ricobene’s (252 W. 26th St., Chicago) from 5 to 8 p.m. on May 20, and Janson’s Drive In (9900 S. Western Ave., Chicago; fliers available on the “Live Like John” Facebook page) on May 26.
In addition, Fit Code, 10418 S. Western Ave., Chicago, will offer a special “Go Gray” workout session at 9 a.m. May 30. The cost is $20, and proceeds will go to the foundation.
Finally, Piccolo Mondo, a restaurant at 1642 E. 56th St., Chicago, will celebrate its 30th anniversary on May 30 with an evening of live music from 7 to 11 p.m., and all profits from bar sales will be donated to the foundation.
The Live Like John Softball Tournament is set for June 13 at St. Rita High School.
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The foundation’s goal is to “eradicate” pediatric brain tumors by funding “innovative and less toxic” treatments than radiation, McNicholas said.
“I think we’re at a real exciting time,” McNicholas said. “There’s been a lot of steps forward recently. We’re also lucky to have one of the best research facilities in the country at Lurie (Children’s Hospital of Chicago) and (Northwestern University’s) Feinberg (School of Medicine).”
McNicholas said the foundation is a cause that young people have embraced. Students from six area high schools — Marist, St. Rita, Mount Carmel, Brother Rice, St. Ignatius and Mother McAuley — have become part of the Live Like John Service and Leadership Institute started in the fall of 2014, forming a board and holding monthly meetings.
“The idea is really to help mold leaders and help them understand what leadership is,” McNicholas said. “The idea is to harness their energy, their passion and to have it be kind of a reciprocal thing. They’re just incredible young people.”
For a complete schedule of events, visit http://www.livelikejohn.org.
Ginger Brashinger is a freelance reporter for the Daily Southtown.