About Spina Bifida Patient Alliance

The Spina Bifida Patient Alliance is a nonprofit organization dedicated to the support of all patients with spina bifida. We are an information resource for patients and their families, a storehouse of knowledge

and experiences from spina bifida patients, a provider of guidance and advice about living with spina bifida, a directory of spina bifida care, and a provider of resources for spina bifida patients. We seek to improve the lives of the patients with spina bifida and their families through knowledge, encouragement, compassion, and encouragement for navigating through life with spina bifida.

Our vision is to be a resource from diagnosis day to adulthood.  So we will also need a place to post referral links and general information.  We would like to be a place that raises funds for gift cards, to give away to those in need for lodging, and meals for healthcare visits.  We would like to be able to help recruit providers so that anyone with SB can find wrap-around care for their healthcare needs.
Many struggle with the debilitating effects of SB as they age.  There are alternative therapies that may help manage pain, and promote some healing, allowing us to stay active and not "lose" any of our abilities.  These therapies include PT, MT and acupuncture in addition to traditional pain management therapy.  The goal is that every person with SB that is capable of living a productive life in society should be encouraged and supported to do so.  Too many with SB have been told that they will never work, and won't ever need that higher education, so they fall into the black hole of forced poverty. It is an ugly and demeaning cycle that does not age well and keeps those with SB away from productive relationships, marriage, children, careers, it's just really sad