SAN FRANCISCO Spina bifida or "open spine" is the most common permanently disabling birth defect in the United States, affecting three in 10,000 births. Because the spinal bones fail to close properly after conception, the child suffers nerve damage and usually has weak or paralyzed leg muscles.
After their daughter, Sophie, was diagnosed with spina bifida at birth, actors Boris Kodjoe and Nicole Ari Parker founded Sophie's Voice Foundation (SVF), a 501(c)(3) non-profit organization that supports medical research, prenatal education and prevention, access to affordable, specialized healthcare services and quality of life issues for children and adults with spina bifida.
Kodjoe and Parker will tell their daughter's story and discuss initiatives of the foundation during a special guest lecture at the American Academy of Pediatrics (AAP) National Conference and Exhibition in San Francisco on Sunday, October 3, from 10:30-11:15 a.m. PT. Sophie's Voice is underwriting a $1.88 million surgical trial at Children's Healthcare of Atlanta, and is establishing a clinic for children and adults with spina bifida in Ghana, Africa.
"Just like polio and small pox have been virtually eradicated, we need to create the political will to prevent future birth incidences of spina bifida and other preventable birth defects. Additionally, we must help heathcare providers establish a transition for children with spina bifida from pediatric healthcare environments into those for adult care," explained Sophie's Voice CEO James Okula.
Many children with spina bifida eventually learn to stand, and some even walk, but it is a grueling and frustrating process. Additional health issues can include bowel and bladder control, psychosocial problems and learning disabilities.
Spina bifida is a preventable birth defect, yet every day, 60 million women are at risk of having a baby born with this developmental disability . Sophie's Voice wants to educate all women of child-bearing ages about the importance of taking folic acid, an inexpensive vitamin supplement. By taking folic acid for three months before conception and during pregnancy, along with maintaining proper nutrition, 70 percent of spina bifida births can be prevented.