Actors Boris Kodjoe and Nicole Ari Parker know first-hand about spina bifida and how it affects a child and family dynamics because their daughter, Sophie, was born with spina bifida.
They founded Sophie’s Voice Foundation (SVF) to further research that may offer viable solutions for better healthcare for children and adults living with spina bifida, to promote its prevention and to improve the quality of life for those living with spina bifida.
Spina bifida is a birth defect which can affect a child’s ability to walk and to control their bladder and bowel functions, as well as affect their brain.
In December 2011, SVF established The Center for Spina Bifida Research, Prevention and Policy (CSB) at Emory University in Atlanta. Children’s Healthcare of Atlanta, Emory School of Medicine and the Rollins School of Public Health at Emory are also founding partners for this center which seeks to provide national and international leadership in healthcare for individuals with spina bifida. CSB initiatives include the global elimination of folic acid-preventable spina bifida and the transition for children from pediatric healthcare into accessible adult healthcare.