Cheektowaga, N.Y. (WBEN) - A local nonprofit founded by a late 9-year-old cancer warrior, Sophia Benintende, has generated an initial $10,000 prior to hosting their first golf tournament at Diamond Hawk to support Ewing Sarcoma cancer research at Roswell Park.
Sophia the Fierce Inc., at Diamond Hawk Golf Course in Cheektowaga on Friday presented an initial donation check of $10,000 to the Joyce Ohm Research Lab located at the Roswell Park Comprehensive Cancer Center campus, which will help support Ewing Sarcoma research initiatives.
"We recently learned that Dr. Ohm will be spearheading a novel research study. This study will be focused on developing new, less toxic treatments for warriors fighting this terrible disease. Specifically, the cancer that they will be studying will be for that which took Sophia, Ewing Sarcoma. We knew immediately when we found about this study, that this was the best use of our donor dollars and fulfillment of Sofia's legacy," said Jillmarie Giardina, Sophia's aunt and founding board member of the Sophia the Fierce, Inc.
Ewing Sarcoma is an aggressive malignancy which predominantly occurs in the bones of pediatric patients and proves a poor survival rate for patients living with metastatic or relapsed disease, leaving young patients and their families with limited options and great need for more effective therapies.
"Ewing Sarcoma is a rare pediatric cancer it often starts in the extremities, so arms and legs. For patients that that do well, we can remove it with surgery, we can often treat them. But unfortunately, as Sophia and her family learned, once this cancer relapses, we don't have any other therapeutic options for these patients that are proven to work. And so pediatric cancer gets only about 4% of the research dollars in the US., so it's really really important these dollars that come in from foundations to help us jumpstart new therapies to help us investigate what goes wrong in the tumors and how we may be able to target them," explained Dr. Joyce Ohm.
Giardina notes that the mission of the Sophia the Fierce organization is threefold: respite, research and relief for cancer kids and their families. In addition to raising money for research, the organization seeks to one day own a private Sophia the Fierce Inc. getaway house for pediatric cancer families. For now, they plan outdoor day and weekly retreats for local warriors in need.
"We are in the works of building a place where warriors can go and just relax and unwind and escape the everyday agony of cancer treatment."
Sophia's Mother, Kristina Benintende added that Sophia was always thinking of others, even immediately after going through chemotherapy treatments.
"She would go from chemo to coming home to brainstorm what she could do that day to help someone," Beintende said. "One day on the way home from chemo, she saw a man under a bridge on the 33, and she came home and she said 'Mom, we have to get him boots. We have to get him a coat. We have to get him everything that he needs.' And that's what she did after her chemo treatment and this is how she lived. She inspired us. She started the charity and has inspired us to carry on her legacy."
Sophia passed away in May of 2023.
Read her full story and more about the foundation efforts here.
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