Project Description

Mission and Background

Sophie’s Voice Foundation was founded in 2008 by actors Boris Kodjoe and Nicole Ari Parker in honor of their daughter Sophie who was diagnosed with Spina Bifida at birth. By dedicating themselves to a healthy lifestyle they found ways to address not only their daughters mental, physical and medical needs but also the needs of their entire family. Boris and Nicole have committed their resources and celebrity to educating multicultural communities worldwide on the importance of families working together to build healthy lifestyle habits one day at a time.

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 total global prevention of folic acid-preventable spina bifida and the transition for children from pediatric healthcare into accessible adult healthcare.

Nicole and Boris are extremely excited and motivated to be a voice for those unheard and to provide education about prevention and a possible cure for this most preventable birth defect.

As our children got older and grew more and more interested in some of our initiatives and projects, we decided to expand the work of the Foundation to accommodate some of Sophie and Nicolas’ social and cultural activism interests. As of June 2019 we have changed the name to the Kodjoe Family Foundation.

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Actors Boris Kodjoe and his wife 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 its bladder and bowel functions, and also affect the brain.

“We are extremely excited and motivated to be a voice for those unheard, and to provide education about prevention and a possible cure for this most preventable birth defect.”

Nicole Ari Parker

Highlights of Past of Sophie’s Voice Foundation Activities

National Advocacy

Sophie’s Voice Foundation met with several offices of the Obama Administration, including Health Reform, the Secretary of Health and Human Services, Public Liaison, Secretary of Commerce and the CDC.

SVF advocates for children and adults with spina bifida and proposed a $200 million annual budget allocation to be given to CDC for worldwide birth defects initiatives and programs.

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Research and Prevention

The Rollins School of Public Health at Emory University (RSPH), Sophie's Voice Foundation (SVF), and Emory University School of Medicine Department of Pediatrics established The Center for Spina Bifida Research, Prevention and Policy (CSB).

The primary goal of the Center is the total, global prevention of folic-acid preventable spina bifida. The Center programs advance the quality of life for individuals living with spina bifida, including individuals transitioning from pediatric to adult care.

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Help Us Make a Difference

Connecting people to information about preventing and managing Spina Bifida through fundraising and awareness.

Make a donation today to help us reach our goal to advance the care and quality of life for children and adults living with spina bifida!

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