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 42 year old women that has SB. I have had well over 20 surgeries I walk with braces and have used crutches off and on,I also use manual wheelchair when I need it. I have a AA degree. I worked with People that also disable to show tham that Just becasue we are Disable dose not mean that we are not Able.
I find many of the resources and information invaluable to my daily life. As a Father of a 6 yr old with Spina Bifida, and as a Husband to a Wife with Spina Bifida, I find help, hope and a sense of community within the SBAA. Thank you!