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11 Reviews
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October 17, 2013

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October 17, 2013

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.

Ways to make it better...

If I had to make changes to this organization, I would...

Re-evaluate the requirements for starting/maintaining local chapters. Too many areas of this population are underserved and the requirements are prohibitive, such as requiring chapters to raise at least $50k for the national association annually.

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

June 2, 2011
1 person found this review helpful

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June 2, 2011
1 person found this review helpful

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.

The Great!

I've personally experienced the results of this organization in...

I love all the Info. that come from SB on Facebook. It help me know what to ask the Doctors

Ways to make it better...

If I had to make changes to this organization, I would...

none

June 1, 2011
1 person found this review helpful

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June 1, 2011
1 person found this review helpful

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.

The Great!

I've personally experienced the results of this organization in...

Information on the changing bodies of SB kids.

Ways to make it better...

If I had to make changes to this organization, I would...

Making the Q & A a little easier from Facebook.

June 1, 2011

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June 1, 2011

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.

The Great!

I've personally experienced the results of this organization in...

my daughter has received scholarships for sports activities such as soccer and swimming.

Ways to make it better...

If I had to make changes to this organization, I would...

change nothing.

June 1, 2011
1 person found this review helpful

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June 1, 2011
1 person found this review helpful

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.

The Great!

I've personally experienced the results of this organization in...

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.

Ways to make it better...

If I had to make changes to this organization, I would...

change nothing. I think it's perfect the way it is.

June 1, 2011
1 person found this review helpful

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June 1, 2011
1 person found this review helpful

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!

The Great!

I've personally experienced the results of this organization in...

yes

Ways to make it better...

If I had to make changes to this organization, I would...

more opportunities for members to interact and share experiences

June 1, 2011

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June 1, 2011

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.

The Great!

I've personally experienced the results of this organization in...

By seeing how it has helped friends with children who have Spina Bifida.

Ways to make it better...

If I had to make changes to this organization, I would...

Just make sure it stays a prominent entity.

June 1, 2011

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June 1, 2011

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

The Great!

I've personally experienced the results of this organization in...

the christmas party brings so much happiness....we learn something new every year there..

Ways to make it better...

If I had to make changes to this organization, I would...

Give them more donation if i could

June 1, 2011

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June 1, 2011

As a person living with Spina Bifida, I have found the SBAWI to be a very good source of information and support. The people are great and I have made some good friends through the organization.

The Great!

I've personally experienced the results of this organization in...

I learned about new products (ex. catheters) that have made my life a lot easier and about other fun activities for people with disabilities.

Ways to make it better...

If I had to make changes to this organization, I would...

Have more free/affordable events more often for all ages.

June 1, 2011

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June 1, 2011

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!

The Great!

I've personally experienced the results of this organization in...

Their research on genetics, and other areas related to spina bifida.

Ways to make it better...

If I had to make changes to this organization, I would...

I feel the organization meets all my family's expectations

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