The Childhood Cancer Project: A Testament to the Power of Community

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Joanna Segal was no stranger to cancer, even before her son, Joshua, was diagnosed with osteosarcoma in 2015. From a young age, Joanna Segal had been involved in childhood cancer causes; a tradition of service instilled in her by her mother. In fact, the day before her son’s diagnosis, she was at a local hospital, delivering food to a family whose child was battling cancer.

“I spent a lot of my days volunteering for childhood cancer,” recalled Segal. “But once Josh was diagnosed, everything changed. We knew it was not good.”

Scott, Joanna, and Josh Segal

Joanna and her husband, Scott Segal, M.D., a South Florida psychiatrist, wasted no time in fighting back against their son’s diagnosis. They contacted Jonathan Trent, M.D., Ph.D., a sarcoma specialist at Sylvester Comprehensive Cancer Center at the University of Miami Miller School of Medicine, to guide them through Josh’s treatment regimen.

“Finding the right cancer doctor is like walking through a path of a million black stones, and then you see a rare diamond. That was Dr. Trent,” said Joanna Segal. “With any type of diagnosis, especially with a rare disease, it’s important to go to a cancer center that specializes in that specific cancer.  We are so lucky in South Florida that we have Sylvester.”

Doctors outlined a treatment regimen to fight Joshua’s osteosarcoma, a rare childhood cancer with no known cure. During grueling chemotherapy treatments, the Segals were shocked to discover that treatments for osteosarcoma had not changed in more than 40 years. At just 11  years old, Joshua was being treated with a potent drug created for adults. Joanna Segal recalls her son suffering painful side effects during the treatment, an agony made worse by her inability to take the pain away.

Even during the harshest times, Segal said the family was surrounded by an incredible network of love and support. When friends and family would ask how they could help, Segal always told them to donate to childhood cancer, yet she could not recommend a foundation that met all their needs.

One of the turning points came in 2016 when the daughter of one of Segal’s close friends, Elise Egozi, cut her long hair to donate in honor of Josh. Sophia Egozi initiated an online fundraiser and raised more than $5,000 for pediatric cancer research. Segal was so moved when Elise Egozi handed her the check that she felt a huge responsibility to get it into the right hands to make the biggest impact.

Just a short time after, as Josh celebrated his 12th birthday, and the near completion of his treatment, he turned to his family and said, “I want to make a wish: I wish that no other child should have to suffer through cancer, like me. We don’t need presents. We need cures.”

Joshua’s words lit a fire in Segal’s heart that day, and soon after, The Childhood Cancer Project was born. Elise Egozi’s check from Sophia’s fundraiser was the Foundation’s first official donation. As founder and president, Segal is spearheading the mission to fund rare childhood, adolescent, and young adult cancer research.

“The Childhood Cancer Project is 100 percent volunteer-run,” said Segal. “We are blessed to be in an extremely fortunate position. There is no overhead because nobody takes a salary. We have an amazing panel of volunteers, an incredible board, and every single penny we raise goes directly toward cancer research.”

To date, the Foundation has donated a total of $300,000 for Dr. Trent’s Synovial Sarcoma Clinical Trial at Sylvester. Synovial Sarcoma is an extremely rare cancer that often affects teenagers and young adults.

“We are so grateful for the support of The Childhood Cancer Project,” said Dr. Trent. “Their generosity has allowed us to perform groundbreaking laboratory research which we will leverage for government funding, advancing the rationale for a novel clinical trial for patients with synovial sarcoma.”

Caryn Lubetsky

One of the Foundation’s most passionate board members, Caryn Lubetsky, literally runs hundreds of miles to raise money for The Childhood Cancer Project.

“I always say that cancer came knocking on Joanna’s door, but we all answered,” said Lubetsky, an endurance athlete who raised $100,000 in one year thanks to her participation in The Keys 100 Ultramarathon.

“We have a tremendous group of women that make up our village,” Lubetsky said. “Each one of us gives back through their own specific talents, and we support each other through all the good and all the bad.”

Indeed, each member of The Childhood Cancer Project has a unique contribution and insight into their mission. Jaye Seidlin is a passionate cancer advocate who serves as the Foundation’s scientific advisor and scientific meeting representative. Lauren Sperber, Joanna’s sister-in-law, oversees innovative fundraising ideas. Longtime friend Joey Chancis also helps with fundraising events.

“Joanna took the worst thing that could ever happen to a mother and turned it into a force for good in the world,” said Seidlin. “That is purpose, mission, hope and joy in action.”

And nothing is holding these phenomenal women back from showing up for this cause, not even COVID-19. “The pandemic definitely affected everything,” said Sperber. “We are very event-focused for our fundraising strategy, but we are also motivated. This year, we are going to fundraise bigger, better, and smarter. This is about developing cures. It’s so much bigger than us.”

Caryn Lubetsky likens their cause to a marathon, not a sprint. “We really believe in finding specific projects that we can back and commit to long-term, which is why we would like to see Dr. Trent’s clinical trial through,” she said. “When I am running and my body hurts and it gets hard, which it does, every single time, I just repeat to myself, ‘This isn’t hard. Chemo is hard. This is a choice. No one chooses cancer…’ and it’s really a metaphor for life. It’s all about coming together, putting one foot in front of the other and pushing forward with gratitude.”

Gratitude is something the Segal family does not take for granted. While Joshua’s cancer may come back, the family recently celebrated five years that he has shown no evidence of disease.

“Josh is a miracle,” said Joanna Segal. “I strongly believe that he has affected so many people and is changing the world through his experience.”

For more information on supporting Dr. Trent’s work at Sylvester and The Childhood Cancer Project, please visit https://thechildhoodcancerproject.org/

 

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