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.
I am a parent of a 9 yr old girl with SB. The resources and support that I have found from SBAA are great. It is also a great resource to find others with the same questions and concerns. Some have all ready gone through what you are experinceing now and are able to pass on their triumphs and unforunate misshaps.
As an adult with spina bifida, the SBA has played a key role in my life. I have appreciated attending the National conference and larning new medical advances, educational legislation and socializing with other adults and families affected by spina bifida. I have also had the opportunity to talk one on one with experts in the field about my personal concerns. Thank youSBA!
My daughter who is 5 right now thrives because of these guys....she gets a chance to get to know other people like her in a fun setting...i get to talk with alot of the other parents and adults living with spina bifida....it teaches me sooo much and it is that hand that is out there helping us so god bless them and thank you so much for what you guys do we love you...
As the parent of a ten-year-old boy with spina bifida, I find SBAA to be an indispensable source of information and support. They provide some of the most valuable services imaginable to families who are dealing with spina bifida. They are a very important organization and do a wonderful job of reaching out to the community they serve in many ways.