I am a mother of a 15 year old girl with SB. As a member of my local SB chapter since her birth, I have been a donor to SBA. You see, in order to use their logo and be listed in their website, each local chapter is required to pay a minimum of around $10,000 a year. The SBA took in $3.5 Million in 2010 ( the last posted 990) and only $124,000 of that went toward grants! They spent a whopping $95,000 on research, whoa... Salary was $1.2 Million. "Other expenses" we're $1.4 Million. I wish we had a real national organization which made a difference in the areas of prevention, awareness, and caring for the affected, but we don't. If we did, the word Spina Bifida would be as well known as Down syndrome. If we did, there would be an actual decline in pregnancies affected by SB, not just more abortions that lower the live births of babies with it. If we did, I would have something positive to say about how they have been there for me and my daughter. But I can't, because they aren't it. The people saying the SBA has made a difference in their lives are likely talking about their local chapter, not the National chapter/ Mother ship. Their local chapters should break off like ours did and spend that extra money on actual services that make a difference in people's lives.
I am the parent of a 5 year old daughter who was born with Spina BIfida. She had a low level lesion and is walking today all by herself!! She has 2 shunts and has hand multiple revisions. We have made many friends in SBA who have supported us through the hospital stays, the frustrating doctor visits, and everything else that goes along with SB. SBA has also helped my daughter by supplying scholarships for activities, she has participated in speical needs soccer and therapuetic swimming. WIthout the support of the SBAC, it may not have been possible. I can't thank them enough.
I am an adult with Spina Bifida. The SBA has connected me with others who have been affected by Spina Bifida that I otherwise would not have met. It has helped me raise awareness about my own disability and to help inform others.