“Having a brain tumor can be a very isolating experience,” says Kayla Giacin. “Even though I was eight when it happened, I learned the journey is never really over.”
In honor of National Brain Tumor Awareness Month, we spoke with Kayla Giacin, quality of life program and marketing coordinator at the Children’s Brain Tumor Foundation. It works to improve awareness and education about brain tumors, in order to eliminate the stigma associated with the disease and its impact on survivors’ capabilities.
The foundation aims to support both survivors and their loved ones through support groups, job and intern placement programs, bereavement groups, and community-building programming. Their holistic approach to community engagement truly resonated with Giacin, who experienced this type of caregiving, firsthand.
What year was your organization founded? 1988
How many employees are in your organization? We are made up of four full time and three part-time employees.
What building are you based in? WeWork 1460 Broadway, N.Y.C.
What made you want to get involved in this kind of work?
I was introduced to CBTF when I attended their Young Adult Heads Up Conference (HUC) in 2011. This is a week-long retreat for brain tumor survivors at Camp Make-a-Dream in Montana. I learned a lot about turning my challenges as a survivor into strengths I could use towards becoming more independent and made many friends who have traveled a similar path. After that experience, I had the opportunity to apply to work with CBTF. Being able to give back to a community who offered me, and others like me, a chance to grow and succeed—seemed like second nature.
What makes your organization unique in its offerings to nonprofits?
Our organization is special because it targets such a specific population, and addresses unique needs that come after being diagnosed with a brain tumor. After a patient finishes treatment, parents, caregivers, and survivors are often left saying “Now what?”
We offer parents and survivors the chance to connect with through our Family 2 Family mentoring program, the Just Us: Father and Survivor Retreat, support groups for teens and young adults, and the camp in Montana. Our programming serve over 150 survivors each summer.
We also offer a career development program where we provide survivors with internships at various financial and insurance companies, many have which turned into paid positions. We are always looking for new employers to work with so we can help dispel any myth that brain tumor survivors are unemployable and educate them on about what it means to work with a disability. Unfortunately, despite medical advances, one-quarter of the children diagnosed with a brain tumor will not survive, so we offer a bereavement program to families, as well.
How are you expanding your reach?
Right now, we offer local programming in the New York tri-state area, Boston, Minneapolis, and Washington D.C. We are looking to expand to San Francisco and then additional areas, as time and funding allow. We do not want any family to travel this journey alone.
For more information, or if you’re interested in offering internship opportunities to brain tumor survivors, please contact swagner@cbtf.org. To create a walking team, become a donor, or corporate sponsor, please contact gshulman@cbtf.org
