Spina Bifida is a defect of the spinal column resulting from the failure of the spine to close properly during the first month of pregnancy. Spina Bifida may cause varying degrees of paralysis, loss of feeling in the lower limbs, and incontinence. It is usually accompanied by the accumulation of fluid in the brain. This birth defect results in a lifetime of need for medical surgical interventions. For many, the total lifetime cost of an infant born with Spina Bifida can be over $1 million.
Very few people are aware that Spina Bifida is the most common disabling birth defect. The statistics are devastating. Each day, an average of 8 babies is born with Spina Bifida or a similar birth defect of the brain and spine. Each year, about 3,000 pregnancies are affected by these birth defects. While Spina Bifida is a life-altering birth defect, it does not have to be a life-ending birth defect. Children with Spina Bifida can conquer their disabilities to become successful individuals participating in all aspects of life. With the appropriate educational, social, and medical support, these individuals can become vital parts of our community.
An estimated 70,000 people in the United States are living with Spina Bifida. People with Spina Bifida can live full, productive lives, but face numerous challenges. SBACFL was founded in 1975 to provide support, information, education, recreation, and advocacy for individuals with Spina Bifida and their families. SBACFL also serves as a source of information for families and others in the Spina Bifida community.
Mission
The mission of the Spina Bifida Association of Central Florida (SBACFL) is to promote the prevention of Spina Bifida and enhance the lives of all affected.Statement of Purpose
- Advocate for the acceptance, accessibility rights, inclusion, treatment options, and well being of people with Spina Bifida.
- Develop, maintain, and provide current information about Spina Bifida to promote public awareness.
- Encourge the development of improved treatment and trained teams to care for all living with Spina Bifida.
- Advocate for appropriate educational, vocational, and community support to encourage self determination.
- Promote research for the prevention of Spina Bifida and related secondary conditions.
Services
- Bi-Monthly newsletter
- Monthly support group meetings for parents, youth, young adults, and adults
- Monthly activities for Youth & Young Adults (YaYA) to improve self-esteem and foster friendships
- Quarterly family events
- Annual conference
- Parent network to aid and educate expecting and new parents on the vital issues they will be faced with on a daily basis
- Camperships
- Conference assistance
- Post Secondary Education Scholarships