“You beat cancer by how you live, why you live, and in the manner in which you live.” – Stuart Scott
On May 16-20, a group of 20 kayakers will undertake a grueling 110-mile trip from Key Largo to Key West. Their venture is a highly physical battle aimed at combating a parent’s worst nightmare: pediatric cancer.
Meet the intrepid group “Kayaking the Keys for Hope” on behalf of the SebastianStrong Foundation.
Born and raised in Miami, Sebastian Nicolas Ortiz was only 15 years old when he was diagnosed with rhabdomyosarcoma, a rare soft tissue cancer. After a 14-month battle that included four surgeries, 32 rounds of chemotherapy and 23 rounds of radiation, he passed away on Dec. 29, 2016.
Today, the foundation established in his honor by his father Oscar directs funding to bolster cutting-edge research for targeted, less toxic treatments of rare pediatric cancers that may not always earn a mainstream spotlight – and the corresponding research funding – with higher patient numbers.
“What we learned was that Sebastian’s only treatment option was over 40 years old,” Oscar told the Weekly. “As much as we talk about innovation in science, pediatric cancer has been left behind, by and large. It’s a result of, and I don’t say this cynically, not enough kids get cancer, so there hasn’t been innovation in that space.
“Really what we serve as is seed capital for ideas that otherwise won’t get off the ground, because there’s not a return on investment.”
Together with a medical board that advises the foundation of the viability of certain projects, SebastianStrong has committed more than $4 million since its inception in 2017 to research at institutions including Yale, the University of Colorado, Albert Einstein Medical College, Johns Hopkins and the Children’s Hospital of Philadelphia.
The majority of the group’s donations flow through its annual Discovery Science Award. In 2022, Sebastian Strong awarded $672,000 – its largest single award so far – to Children’s National Hospital for a project aiming to use ultrasound technology to deliver targeted, localized medications through the blood brain barrier as a therapy for brain tumors.
“For me, the core of it was, how do we create more options for hope?” Ortiz said. “They aren’t all going to be home runs, but they’re funding a chance, and that’s all any parent (in that situation) wants.”
The kayakers’ upcoming five-day journey is a nod to the physical and emotional toll cancer takes on families undergoing treatment.
“For me, there’s a beautiful symbolism between the water, going through the Keys and paddling to honor someone,” said Kelsey Weaver, a SebastianStrong board member and Marathon resident.
Though an understandably limited group will take up the mantle of the full journey – with others, including Weaver, joining for specific portions – the foundation has invited four families affected by childhood cancer, including some survivors, to paddle the final mile in Key West with the crew.
Keys residents who would like to support the paddlers on their journey can join the team for a happy hour at Marathon’s Keys Fisheries on Thursday, May 18 around 6 p.m. (subject to paddling delays) or cheer them on at their final landing at the Stock Island Yacht Club on Saturday, May 20 at 1:30 p.m.
“We can’t wait to host this group,” said Keys Fisheries bartender Rachel Bowman. “Anything we can do to help support those who give hope to others, we absolutely want to be a part of it.”
To learn more about SebastianStrong and support the nonprofit foundation with a donation, visit sebastianstrong.org.