9/20/2019 | Team United
Photo courtesy of the Alex Mandarino Foundation
It’s often said that numbers don’t lie. And in the case of childhood cancer, the numbers are staggering.
“A lot of people don’t know the numbers until you are thrust into this nightmare,” said Tony Mandarino, founder of The Alex Mandarino Foundation and a United Federal Credit Union employee.
In 2011, shortly before his third birthday, Tony’s son Alex was diagnosed with Stage 4 neuroblastoma. The Mandarino family quickly learned of the challenges facing them in the years ahead.
“Cancer doesn’t discriminate: age, gender, socio-economic class, race, region,” said Tony. “Literally every person in this world can be impacted by this disease.”
September is Childhood Cancer Awareness Month, and since 2012 when President Obama made it a formal declaration, more effort has been placed on getting the word out about young people fighting cancer.
According to studies, two-thirds of children treated for childhood cancer will suffer long-term effects from treatment including loss of hearing and sight, heart disease, secondary cancers, learning disabilities, infertility and more.
In the last 20 years, only three new drugs have been approved that were specifically developed to treat children with cancer.
“You start reading about the facts, and it’s so counterintuitive to see that so little money goes towards childhood cancer research,” said Tony.
In fact, only about 4% of the U.S federal funding for cancer research goes towards children.
From the time of his diagnoses in 2011, Alex’s “normal” life became a series of pokes and prods, tubes and ports, medicines and radiation—all of which he learned to take in stride. The hospital became his and his family’s second home. They learned about medications and procedures they couldn’t even pronounce a month before.
Because the usual protocol for neuroblastoma was not effective, Alex went to Memorial Sloan-Kettering Cancer Center in New York City for an ongoing series of experimental drugs and trials.
Everyone was sure Alex was going to beat this horrible disease. He was a fighter and didn’t like to lose. The Mandarinos were just waiting for the magic words. But instead heard, “There’s nothing more we can do for Alex.”
In 2013, Alex passed away the same way he entered this world five short years earlier—in his mother Katie’s arms.
Raising awareness about childhood cancer is about more than numbers, it’s about names—survivors and those who passed away.
Following his passing in 2013, The Alex Mandarino Foundation was created to honor his courage and strength. As a non-profit 501(c)(3) tax-exempt public charity, its goal is to fund research that will help save the lives of children with cancer and provide funding to families who need support.
“We tell people all the time, Alex fought way too hard to for us to stop his battle,” said Tony. “We hope we’re cured out of existence, but even if that were true, there would still be a need to support families who are just starting their battle. When we’re writing letters and sending checks to families, I always imagine the people’s faces when they open it on the other end. It’s not a huge amount of money, but it’s gas money, co-pay on insurance—it means the world for families that are going through this. There is no dollar amount that’s too small.”
Because the bulk of funds raised for childhood cancer come through grassroots organizations like The Alex Mandarino Foundation, it often leads to awareness being spread at the community level. In St. Joseph, Michigan, Alex’s Duck Duck Run has been held since 2013 and has raised over $200,000 for childhood cancer research. All proceeds go to funding the best clinical trials and research.
Both the Foundation name and the 5K are named after Alex for a reason, so that others never forget the person who inspired an entire community.
“At the end, all you have is your legacy,” said Tony. “What Alex did in his five years, I could live to be 105 and not touch the world the way he did. As a father, that is so awesome. He’s made a name for himself for generations.”
Raising awareness for childhood cancer research and funding is a way for individuals, friends, family, and communities to help those currently battling the disease.
“Continue to help spread the word and keep up the prayers and support,” said Tony. “Carry the torch for the families as they work through treatments and hospital stays. We all run in different circles, and increasing the awareness of childhood cancer, leads to the funding of research.”
Tony is quick to point out that awareness and support doesn’t always have to mean financial.
“The best thing is the prayers, thoughts, and support from the community and friends and family. It’s hard to describe, but you can actually feel it. We felt the love and support from everyone during Alex’s battle.”
For families currently fighting cancer, Tony has a simple message.
“Keep battling. Take the strength from your children and the children that you see in the clinic around you. There’s no playbook or blue prints on how to get through it. Don’t be afraid to reach out to people or organizations. We live in a world where you see a lot of bad things happen, but there’s still a lot of generous people out there. I believe this is a world filled with mostly good people.”
Want to learn more or donate? Visit these sites:
The Alex Mandarino Foundation was founded in 2013 by Tony and Katie Mandarino to honor the courage and strength of their son, Alex. It is a non-profit 501(c)(3) tax-exempt public charity. Its goal is to help save the lives of children with cancer.
Most pediatric cancer treatments have not significantly improved in the past 20 years. Without funding, progress cannot be made to find a cure for childhood cancers or improve the effectiveness of their treatments. For our most vulnerable family members, this is unacceptable. That is why The Alex Mandarino Foundation exists.
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