Spina Bifida Association

The Spina Bifida Association is dedicated to preventing Spina Bifida in future generations and improving the lives of those with Spina Bifida through education, advocacy, research and service.

Why do we exist?

The Spina Bifida Association (SBA) is the only national voluntary health agency working for the more than 70,000 individuals with Spina Bifida and their families through, education, advocacy, research and service.  Spina Bifida is the nation’s most common permanently disabling birth defect.  SBA works tirelessly to help those who live with Spina Bifida today and to prevent the recurrence of Spina Bifida in future generations.

Spina Bifida is not one condition, but a multitude of devastating challenges that affect the mind, the body and the spirit.  No two cases of Spina Bifida are ever the same.  Up to 90 percent of children with the most severe form of Spina Bifida have hydrocephalus (fluid on the brain) and must have a permanent shunt surgically inserted to facilitate drainage.  Other conditions include full or partial paralysis, bladder and bowel complications, learning disabilities, depression, deadly latex allergy and social issues.

What have you accomplished?

“The joy and pride I felt as I held her close to my heart was tempered by the unknown future and the doctors’ scary prognosis.”
—Cheryl Veenstra, mother of Cassidy who has Spina Bifida.

SBA has been an important part of the Veenstra family’s life. Cheryl says, “The information we've obtained from SBA and the friendships we've discovered in our local SBA group have been a priceless gift. Parents exchange information, experience, support and encourage each other. The children make special friendships with others who have the same feelings, face similar adversity and rejoice in hard-won achievements.”

This story about the Veenstra family is just one example of the many ways the SBA helps your community.  With the passage of the Birth Defects and Developmental Disabilities Prevention Act of 2003, the National Spina Bifida Program was officially recognized as part of the National Center on Birth Defects and Developmental Disabilities.  Through the tireless efforts of numerous national leaders and the Congressional Spina Bifida Caucus, the 2005 Fiscal Year budget for the National Spina Bifida Program was more than $3 million. 

SBA offers award-winning programs on awareness and outreach, quality of life and prevention.  SBA provides our community with specialized health information for adults, scholarship programs, teen mentoring programs and essential medical management tips for children along with outreach programs on prevention and awareness.  SBA’s Headquarters houses the National Resource Center where we answer questions from thousands of individuals from across the country.  

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