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Nonprofit Overview

Causes: Health, Nerve, Muscle & Bone Diseases

Mission: TO PROVIDE INFORMATION RELATED TO THE BIRTH DEFECT OF SPINA BIFIDA, INCLUDING PROGRESS IN THE AREAS OF MEDICINE, EDUCATION, LEGISLATION AND FINANCIAL SUPPORT; TO HELP FUND RESEARCH INTO THE CAUSES, EFFECTS AND TREATMENT OF SPINA BIFIDA; TO ENCOURAGE THE TRAINING OF PROFESSIONALS INVOLVED IN THE TREATMENT OF SPINA BIFIDA.

Programs: Research - the spina bifida association is developing the spina bifida collaborative care network to improve the health care of people with spina bifida enabling them to have better care. The sbccn, when completed, will build a system that monitors, tracks, and evaluates care provided in spina bifida clinics and other health care settings. The sbccn is made up of people of different backgrounds and experiences: spina bifida association (sba) staff, chapter leaders, doctors, nurses, psychologists, the centers for disease control and prevention (cdc), parents of children with spina bifida, and adults with spina bifida.

education - the spina bifida association's education programs provide parents, caregivers and persons living with spina bifida with tools and resources at critical points in development and transition. Education and informational resources were provided to over 4,900 people with spina bifida, parents, and caregivers.

member services/chapter development - the spina bifida association promotes the growth and development of its 19 chapters through technical assistance in capacity building, communications, programmatic resources and grants.

Community Stories

1 Story from Volunteers, Donors & Supporters

Volunteer

Rating: 5

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.