Nine years ago, Cristy Wade and her husband Jim learned their 10-year-old son Ryan had tuberous sclerosis complex (TSC), a rare genetic disorder that causes benign tumor growth along vital organs.
“Since Ryan’s diagnosis, our family has been faced with constant worry, fear, and medical appointments,” Cristy explains.
She and Jim read everything they could about TSC and attended conferences around the country to become stronger advocates for their son. In the process, they encountered insights from two of the field’s leading researchers, Elizabeth Henske, MD, MPH, and David Kwiatkowski, MD, PhD, of Brigham and Women’s Hospital.
“The impact these two committed TSC scientists are making in research and care compelled us to support their work,” says Cristy.
By contributing $100,000 to BWH and establishing a research fund directed by Henske, the family’s goal is to aid discoveries that will advance care for the nearly one million people worldwide suffering with TSC. The family also wants to shine a light on the need for philanthropic funding for this kind of groundbreaking science.
Cristy notes the investigations of Henske and Kwiatkowski could be the key to improved quality of life—and a cure—for those living with TSC. She says, “We see our gift as an investment in science that could impact care for Ryan and so many others.”