When Joshua Segal was diagnosed in 2015 with osteosarcoma, a rare childhood cancer with no known cure, his parents wasted no time in contacting Jonathan Trent, M.D., Ph.D., a sarcoma specialist at Sylvester.
“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.”
Dr. Trent helped guide the family through Joshua’s treatment regimen. Still, the chemotherapy was grueling, and 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, an agony made worse by her inability to take the pain away.
“Synovial sarcoma patients are often young adults or even teenagers,” Dr. Trent explained. “This is a vulnerable population since they don’t fit in with pediatric or adult cancer clinics.”
A year later, 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.”
That was all the inspiration that Joanna and her husband, Scott Segal, M.D., a South Florida psychiatrist, needed: The Childhood Cancer Project was born, and the impact has been potentially lifesaving.
“We currently have three clinical trials for synovial sarcoma patients in South Florida and beyond,” Dr. Trent said. “Our research lab published an important paper on synovial sarcoma in 2021. This research would not be possible without The Childhood Cancer Project.”
“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.”
"Gratitude is something the Segal family does not take for granted. “Josh is a miracle,” said Segal. “He didn’t choose to have cancer, but he did choose to focus on making a difference for others.”
SYNOVIAL SARCOMA CLINICAL TRIALS: 2021
STUDY OF ASP0739 ALONE AND WITH PEMBROLIZUMAB in Advanced Solid Tumors With NY-ESO-1 Expression Participants FHD-609 in Subjects With Advanced Synovial
TESTING THE ANTI-CANCER DRUG, ROGARATINIB (BAY 1163877), for Treatment of Advanced Sarcoma With Alteration in Fibroblast Growth Factor Receptor (FGFR 1-4), and in Patients With SDH-deficient Gastrointestinal Stromal Tumor (GIST)