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October 17, 2013


October 17, 2013

I am the parent of a 7 year old daughter who has spina bifida. I have donated time and energy (using a half marathon to raise awareness and around $7k) and personal funds to this worthy organization.

The Spina Bifida Association is the ONLY national nonprofit exclusively serving those
affected by SB. The SBAA's outreach programs inform the public of the importance of folic acid as the best preventative against a pregnancy affected by SB. Their educational programs include Preparations and SB University, which are both FREE online resources designed to help those with SB reach their full potential. In addition, the SBAA hosts a bi-annual National Conference, where adults and parents of children living with SB come together to learn the latest medical advances relating to this birth defect. On the "off" years, they travel the country hosting one day seminars for those who cannot attend the full week conference.

The SBAA has been a champion for research, advocating before Congress for funding to find more ways to prevent SB and to enrich the lives of those affected. They also host an international symposium for medical practitioners and scientists to come together to share information about research pertaining to the SB population.

I personally have attended both the National Conference and both of the World Congresses of Spina Bifida Research and Care. I found them to be invaluable sources of information; in fact, at the first World Congress, I learned of a continence procedure that was commonly performed on the west coast, but which our doctors in Memphis had never heard about. Thanks to that information, I was able to work with our local doctors to try the procedure on my child, and I cannot stress how much this ONE CHANGE has improved her quality of life.

I believe wholeheartedly in the mission of the Spina Bifida Association of America, which is the prevention of new occurrences of SB while also enriching the lives of those affected by this complex birth defect.

Ways to make it better...

If I had to make changes to this organization, I would...

Re-evaluate the requirements for starting/maintaining local chapters. Too many areas of this population are underserved and the requirements are prohibitive, such as requiring chapters to raise at least $50k for the national association annually.

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