Over 1.8 million nonprofits and charities for donors, volunteers and funders

Claim This Nonprofit

More Info

Add to Favorites

Share this Nonprofit

Donate

Nonprofit Overview

Causes: Health, Nerve, Muscle & Bone Diseases

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.

Community Stories

3 Stories from Volunteers, Donors & Supporters

Jamie F.

Donor

Rating: 1

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.

Donor

Rating: 5

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.

1 Kayla O.

Donor

Rating: 5

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.