St. Baldrick’s Foundation
Nominated by bestselling author Cara Lockwood
The Chicago winter of 2014/15 was especially cold for Sarah Zematis, who lost nine friends and family members that bleak season, eight of them to cancer. In her grief, Sarah decided to do something – donate her hair to make a wig for those struggling with cancer.
She decided to chop her ponytail at a local event for the St. Baldrick’s Foundation, the nation’s largest private source of funding for pediatric cancer research. The event was to be in honor of a friend’s daughter who had passed from pediatric cancer. Although she didn’t know any children with cancer, she felt it was a good fit. She had no idea how right she was.
Just twelve days later, Sarah’s two-year-old daughter, Sophia, was diagnosed with an inoperable brain tumor.
Sarah and her husband, Scott, felt like they had been thrown into the deep end of the pool, trying to understand what was happening to Sophia and full of questions about her treatments, medications and pediatric cancer in general. They soon learned that the pediatric cancer world has very few answers.
The main reason for this is a severe lack of research funding. The National Cancer Institute allocates only a small fraction of their budget to all pediatric cancers. Pharmaceutical companies do not invest in this area because it is not profitable. Because of this, these children are treated with extremely toxic and non-specific drugs, formulated for adult bodies. Families can easily become frustrated when faced with the limited options they are given.
Sarah soon saw that the only way to get the answers they so desperately sought was through research. As the fog of diagnosis lifted, Sarah saw clearly how fate had stepped in when she signed on for the soon to happen St. Baldrick’s event. Their funding of vital research has brought about real change. Last year, through research conducted under their umbrella, a new drug to specifically combat pediatric brain tumors was finally FDA approved.
The community rallied around Sophia, Sarah and their entire family, making this event a huge success and, from that, a long-lasting partnership with the Zematis family (otherwise know as Team Z) and St. Baldrick’s was born. Sarah works tirelessly to support the Team Z for Phi Hero Fund, hosted by St. Baldrick’s and, in return, they work in tandem to decide the best scientific research to fund with their community’s donations.
While Sophia has experienced many ups and downs with her health, Sarah knows how important it is to stay upbeat. “If I stay positive, then our whole family and the community will be positive, and that’s the kind of energy that is capable of changing the course for not only Sophia but for all of the children struggling with a pediatric cancer diagnosis.”