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H Welcome To Our Site

SOPHIE'S VOICE FOUNDATION is a charitable organization supporting family outreach programs, prenatal education and surgical studies for children and adults with Spina Bifida.

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. The news hit hard, but through consulting with various specialists and by educating themselves they found a way to address their daughter's needs and provide her with the best care and treatment available today.

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Spina Bifida or "open spine" is a neural tube birth defect that affects the development of the spinal cord, its membrane (lining), the spinal nerves and the backbone.

It is the most common permanently disabling birth defect - the most complex birth defect compatible with life.

Spina bifida affects three in 10,000 births in the United States and currently an estimated 130,000 people in the United States are currently living with spina bifida

There are 60 million women at risk of having a baby born with spina bifida.


FIND SOLUTIONS FOR DAY-TO DAY LIVING AT THE ABILITIES EXPO

People with disabilities can discover the latest technology, products and services to improve their daily living at the Abilities Expo, which will be held in six major US cities (listed below) during 2012.  Admission to the three-day expo is FREE.  The expo features products, services, supportive organizations, workshops and entertainment - including assistive technology, daily living aids, medical equipment and adaptive sports. 

Cities and dates for the Abilities Expo:

ATLANTA  February 17-19, 2012
LA  March 30 - April 1, 2012
NYC  May 4-6, 2012
Chicago  June 29 - July 1, 2012
Houston  August 3-5, 2012
San Jose  November 1-18, 2012

For city locations and hours of operation, visit the Abilities Expo website at www.AbilitiesExpo.com or click here:

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The Winter 2012 edition of the SVF newsletter, Voices, will be available online in February.  Check back to read and download information about The Center for Spina Bifida Research, Prevention and Policy.  

Donate to Sophie's Voice Foundation(SVF) by texting SVF <space> and the amount you wish to donate to 27138.

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Currently, SOPHIE'S VOICE FOUNDATION is planning and hosting fundraisers across the nation to provide $2 million seed funding for a national The Center for Spina Bifida Research, Prevention and Policy.  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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News & Events

SOPHIE'S VOICE ESTABLISHES A NEW CENTER FOR SPINA BIFIDA AT EMORY UNIVERSITY

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.  

Sophie's Voice Foundation is committed to raising $2 million as seed funding for the Center.

 


NICOLE ARI PARKER TO MAKE BROADWAY DEBUT

Nicole Ari Parker, co-founder of Sophie's Voice Foundation (SVF) with husband Boris Kodjoe, is Broadway bound in the role of a lifetime.

Nicole will star opposite Blair Underwood in a revival of Tennessee Williams' legendary classic, A Streetcar Named Desire - one of theatre's most powerful plays, offering the dream role of actors.  Nicole will play the role of Blanche Dubois to Underwood's Stanley.

Sophie's Voice Foundation will plan a trip to NYC to see the play and lend Nicole its support; details to be announced at a later time. 

See Nicole in the new SVF public service announcement here on our website and also on YouTube.

 


A STATEMENT ABOUT THE XIAO PROCEDURE SURGICAL TRIAL

Since its inception, Sophie's Voice Foundation has closely monitored nerve rerouting surgery for bladder reinnervation as an avenue for research and treatment of children with spina bifida.  Initial reports of this procedure, which was developed in China, suggested a very good success rate so that children could empty their bladders on their own and stay dry.   For the past three years, we worked with doctors at Children's Hospital of Atlanta worked to develop a protocol for a surgical trial to be conducted in Atlanta while reviewing the results that were coming out of North American centers.

At this point, there is evidence that nerve rerouting can successfully bring new functional nerves into the bladder.  This means that nerve rerouting should remain an important avenue for research.

However, the results in North America as measured by improvement in bladder function and continence have not yet matched the results in China

Neuroscience tends to be very complex and scientists and doctors are just beginning to understand the way that nerves behave when they are divided and reconnected during  rerouting procedures.   There are many questions at a basic science level that will need to be answered in order to better understand how this procedure works and how it can be made more successful.  Fortunately, the National Institutes of Health is supporting an effort continue evaluation of this procedure.  We will continue to closely monitor emerging results.  For now, Sophie's Voice Foundation and the participating physicians at Children's Healthcare of Atlanta believe that the most prudent course is to await these results.  We will continue to focus on the prevention of spina bifida, prenatal education, support of family outreach programs and research that improves the quality of life for children with spina bifida.

 


SVF HAS A NEW, UPDATED FACEBOOK PAGE

Sophie’s Voice Foundation (SVF) now has an official page on FacebookClick here to “like” our page.  Feel free to invite your friends and associates to become friends of SVF also.

 


MAKE A DONATION TO SOPHIE'S VOICE FOUNDATION FROM YOUR CELL PHONE!

Donate to Sophie's Voice Foundation (SVF) by texting SVF <space> and the amount you wish to donate to 27138. You’ll hear a message from Boris Kodjoe; have your credit card handy when you text the message.

Provided by MobileCause. Messaging & Data Rates may apply. All donations are billed to your credit card.  Donations are collected for the benefit of Sophie's Voice Foundation by MobileCause.  Text HELP4help or STOP2stop to 27138.

RECEIVE MONTHLY CELL PHONE TEXT ALERTS FROM SVF ABOUT NEWS, EVENTS AND OTHER ACTIVITIES!

Please e-mail your name and cell phone number to jokula@sophiesvoicefoundation.org.  You will receive a text message asking you to join the SVF text alert service.  To accept, reply with a “Y

You can help our efforts by spreading the word to your friends within your social media networks, like Facebook and MySpace.