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 7 year old daughter who has spina bifida. I have donated time and energy (using a half marathon to raise awareness and around $7k) and personal funds to this worthy organization.
The Spina Bifida Association is the ONLY national nonprofit exclusively serving those affected by SB. The SBAA's outreach programs inform the public of the importance of folic acid as the best preventative against a pregnancy affected by SB. Their educational programs include Preparations and SB University, which are both FREE online resources designed to help those with SB reach their full potential. In addition, the SBAA hosts a bi-annual National Conference, where adults and parents of children living with SB come together to learn the latest medical advances relating to this birth defect. On the "off" years, they travel the country hosting one day seminars for those who cannot attend the full week conference.
The SBAA has been a champion for research, advocating before Congress for funding to find more ways to prevent SB and to enrich the lives of those affected. They also host an international symposium for medical practitioners and scientists to come together to share information about research pertaining to the SB population.
I personally have attended both the National Conference and both of the World Congresses of Spina Bifida Research and Care. I found them to be invaluable sources of information; in fact, at the first World Congress, I learned of a continence procedure that was commonly performed on the west coast, but which our doctors in Memphis had never heard about. Thanks to that information, I was able to work with our local doctors to try the procedure on my child, and I cannot stress how much this ONE CHANGE has improved her quality of life.
I believe wholeheartedly in the mission of the Spina Bifida Association of America, which is the prevention of new occurrences of SB while also enriching the lives of those affected by this complex birth defect.
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 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.
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.
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!
This is a wonderful non-profit. It has helped to further the awareness of Spina Bifida to the general public. This is a great way for us to reach out to those who have it and their families.
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...
Love Sara and Saida and Drew
