Spina Bifida Association of America

Rating: 4.42 stars   12 reviews

Address:

4590 MacArthur Blvd Nw Ste 250 Washington DC 20007 USA

Mission:

TO PROVIDE INFORMATION RELATED TO THE BIRTH DEFECT OF SPINA BIFIDA, INCLUDING PROGRESS IN THE AREAS OF MEDICINE, EDUCATION, LEGISLATION AND FINANCIAL SUPPORT; TO HELP FUND RESEARCH INTO THE CAUSES, EFFECTS AND TREATMENT OF SPINA BIFIDA; TO ENCOURAGE THE TRAINING OF PROFESSIONALS INVOLVED IN THE TREATMENT OF SPINA BIFIDA.

Programs:

Research - the spina bifida association is developing the spina bifida collaborative care network to improve the health care of people with spina bifida enabling them to have better care. The sbccn, when completed, will build a system that monitors, tracks, and evaluates care provided in spina bifida clinics and other health care settings. The sbccn is made up of people of different backgrounds and experiences: spina bifida association (sba) staff, chapter leaders, doctors, nurses, psychologists, the centers for disease control and prevention (cdc), parents of children with spina bifida, and adults with spina bifida.

education - the spina bifida association's education programs provide parents, caregivers and persons living with spina bifida with tools and resources at critical points in development and transition. Education and informational resources were provided to over 4,900 people with spina bifida, parents, and caregivers.

member services/chapter development - the spina bifida association promotes the growth and development of its 19 chapters through technical assistance in capacity building, communications, programmatic resources and grants.

2011 Top-Rated Nonprofit
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More Info

(202) 944-3285
http://www.spinabifidaassociation.org

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Reviews for Spina Bifida Association of America

Rating: 4 stars  

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.

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

Information on the changing bodies of SB kids.

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

Making the Q & A a little easier from Facebook.

 
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Rating: 4 stars  

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!

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

yes

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

more opportunities for members to interact and share experiences

 
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Rating: 5 stars  

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

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

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

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

Give them more donation if i could

 
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Rating: 5 stars  

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.

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.

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

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

 
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Rating: 5 stars  

As the parent of a ten-year-old boy with spina bifida, I find SBAA to be an indispensable source of information and support. They provide some of the most valuable services imaginable to families who are dealing with spina bifida. They are a very important organization and do a wonderful job of reaching out to the community they serve in many ways.

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

Many aspects of my son's life, especially learning about long-term prognoses, medical and hygiene issues, and socialization.

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

Perhaps make the conferences less expensive; many families we know can't attend the conferences because of the prohibitive price. I know these things are expensive to put on, but families who deal with spina bifida already have many expenses on the table.

 
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