By Grace Kuikman
At the end of June, eight area teens will be traveling to Washington D.C. to sit down with legislators and talk about the need for more funding, awareness and advocacy for pediatric brain tumor research and treatment.
Those legislators will be mighty impressed. The teens, members of the Live Like John Service Leadership Institute (LLJSLI), not only know the facts and figures, they are passionate about the true meaning of community service and already gaining valuable experience in taking leadership roles that advance the mission of the Live Like John John McNicholas Pediatric Brain Tumor Foundation is to push for advancements in care and treatment of pediatric brain tumor patients.
The LLJSLI was founded four years ago and provides an outstanding opportunity for high school sophomores through seniors to put their passion into action. Currently, 35 teens are serving on the board coming from St. Rita, Brother Rice, St. Ignatius, Fenwick, Jones College Prep, Whitney Young, Mount Carmel, Marist, Mother McAuley and Richards high schools. Students must complete applications and participate in a set of interviews before being accepted into the group. Once they join, they must commit to a robust schedule of monthly meetings and special events that they help to create, plan, promote and present.
Being a member of the LLGSLI is not about earning service learning hours. According to Amy McNicholas, Live Like John Foundation founder and mother of the late John McNicholas for whom the foundation was created, the aim of the student group is to provide the profound experience of what it means to be of service, to be a leader and to give back to the community. This challenge reflects the fundamental spirit of Live Like John, founded in 2012 in honor of John McNicholas who, during his struggle with a brain tumor, “lived his life to the fullest and faced his illness with courage and grace” (livelikejohn.org).
When Mia Rugai (St. Ignatius 2019), Sarah Dunn (Mother McAuley 2019), Liam Guest (Mount Carmel 2020), Sean O’Keefe (Jones 2020), Grace Clancy (St. Ignatius 2021), Grace Gorman (Mother McAuley 2019), Thomas Stanton (Whitney Young 2020) and Brigid Ross (St. Ignatius 2021) arrive in Washington DC later this month, their experience in the LLJSLI group will have prepared them to be articulate, passionate, informed and confident advocates as they ask legislators to support the Live Like John demand for “better care, better cure.”
Among the impactful pieces in the LLJSLI arsenal of information is “A Look at the Numbers,” a short video developed and produced by the students that shares some compelling statistics our legislators should know: Every day 13 children are diagnosed with brain cancer, and 72% of them are under age 15; 1 in 5 children with cancer will die; 5 times more funding goes to adult cancer research than pediatric cancer research; and of the entire National Institute of Health research budget for all childhood cancers, only 4% is earmarked for brain cancer.
LLJSLI was founded to provide opportunities for motivated students to work with a successful foundation board on programs that support a worthwhile cause. The students develop creative ways to support the work of the Live Like John board, assisting in the foundation’s mission-based activities. LLJSLI meetings follow Roberts Rules of Order, feature guest speakers and mentors representing fields from medicine to law, military to journalism, and require an impressive level of commitment from the busy high schoolers. The students work on Live Like John awareness and fundraising events such as the Beverly Hills Turkey Trot in the fall, Go Gray in May awareness campaign in the spring, and the Live Like John softball tournament coming up on June 15. According to Amy McNicholas, when the students go o to college and careers, the skills and discipline they learn as members of the LLJSLI have them well prepared to be tomorrow’s leaders.
Applications for the 2019-2020 LLJSLI are closed, but information about the program, upcoming events, the Live Like John Foundation, and how to support its work is available at livelikejohm.org.
