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.
Boris Kodjoe is an accomplished actor, former model and professional tennis player. He was cast in Showtime's award-winning series "Soul Food," a show that introduced him to his co-star and future wife, Nicole Ari Parker. He has appeared in numerous TV shows and films, and most recently has been cast as the male lead in J.J. Abrams' new fall TV series, "Undercovers" which premieres on Wednesday, September 22 at 8pm on NBC.
Nicole Ari Parker is best known for her role as Teri Joseph in "Soul Food." She has an extensive background in theater, and has been featured in many films and television series throughout her career. In January 2009, Nicole was featured in People magazine to introduce Sophie's Voice to raise awareness about children and adults living with spina bifida. When their acting schedules allow, Boris and Nicole are very active in fundraising events around the country and in promoting the efforts of Sophie's Voice Foundation.
Reporters wanting to attend the session should first stop by the press room (room 224/226) at the Moscone Center to obtain press credentials.
Sophie's Voice Foundation is headquartered in Atlanta, GA. For more information about the Foundation or the surgical trial, contact SVF CEO James Okula at 404-377-1104 or email@example.com
The American Academy of Pediatrics is an organization of 60,000 primary care pediatricians, pediatric medical subspecialists and pediatric surgical specialists dedicated to the health, safety and well being of infants, children, adolescents and young adults. For more information, visit www.aap.org.