Welcome to the Spina Bifida Association of Western Pennsylvania

The Spina Bifida Association of Western Pennsylvania is committed to improving the quality of life for people with disabilities, especially those with spina bifida and their families, by providing a continuum of direct service, education and advocacy.
The Spina Bifida Association of Western Pennsylvania (SBAWP) is a nationally recognized, charitable, nonprofit provider of information and direct services to children and adults with spina bifida and their families. SBAWP has served nearly 1000 children, teens and adults living in 28 counties within Western Pennsylvania and portions of New York, Ohio, and West Virginia.

SBAWP was originally formed in 1969 as a parent support group, and now offers a variety of programs and services including FireFly Camps and Retreats, the Gatehouse Pre-vocational and Life Skills Program, and Adult Community and Support Services. Through its programs and services that span a lifetime, the SBAWP gives individuals the resources, self-confidence, and practical skills to lead full and active lives and become contributing members of the community.

SBAWP’s corporate office is located in Wexford, PA and employs a part-time and full-time staff of trained professionals as well as administrative and support personnel. SBAWP is governed by a board of directors comprised of members of the community, parents of children and adults with spina bifida, and business and medical professionals. Programming and operating costs are funded by individual donations as well as federal, state, corporate and private grants.

Thank you for all of your support!

Congratulations to our winners!

PURSES:  T. Krysinski, K. Whiteford, J. Thompson, D. Brewer, C. Weston, J. Carusso, E. Hackl, E. Kowalczyk, J. Bish, W. Flynn, S. Walter, D. Fisher, L. Santilli, A. Lyon, A. Warheit, D. Salopek, M. Graff, P. Sommers, N. Wnorowski, K. Hackl, A. Warheit, K. Brackett, C. Taylor, and L. Cohen

BASKETS: D. Fisher, K. Fultz, S. Schutte, A. Wilkinson, B. Duch, B. Lamagna, C. O’Rouke, D. Palachak, W. Stang, J. Moser, M. Rodriguez, E. Kowalczyk, K. Noll, and S. Rodriguez

Fall Weekend Retreats:

Youth and Teen Fall Retreats

Adult Fall Retreats

Thank you for making the 2019 Shoot for SBAWP a huge success!

Our second annual clayshoot was held on Wednesday, September 11 at Seven Springs.

Recent Event

Girlfriends for Good Purse Bash

Recent Event - March 3, 2019 - 6th Annual Afternoon JamFest at Jergels!

2019 Marks the 50th Anniversary of the Spina Bifida Association.  Since our first meeting in 1969, we have been working hard to pave a path for a brighter, stronger future by building strong kids, strong families and a strong community for individuals with spina bifida and their families.  And it was time to CELEBRATE!

All proceeds from the event benefitted SBAWP and help to operate local programs, which support the individuals we serve find a place to belong, to renew their enthusiasm, build character, and overcome obstacles on their journey to become thoughtful, active, and successful members of our community.

Recent Event

Noll-Spratt Golf Scramble Inspiration

In 2016, in determining a high school senior project, Brandon Noll and Tanner Spratt were inspired by the shared impact spina bifida has had on their families. This year, their younger sisters, Jordin and Rebecca, were excited by the opportunity to continue the family tradition.

Jordin and Brandon’s cousin, Abby McCormick, has spina bifida and they have witnessed the impact the camps sponsored by the Spina Bifida Association of Western PA have had on her life. Abby has talked for years about her love for the Spina Bifida Association camps and the great friends she has made there.

Rebecca and Tanner’s extended family –his mother’s friend whose son, Nick, has spina bifida – was the driver of his interest in supporting the Spina Bifida Association. For Rebecca, the inspiration came from her admiration of the sled hockey athletes with spina bifida. In Rebecca’s words “ I admire how Nick and Abby can play sled hockey like they do.  The fact that they can perform at such a competitive level while dealing with a condition so life changing is beyond amazing.”

Brandon and Tanner chose to organize the 2016 golf outing for the benefit of the Spina Bifida Association to bring awareness about spina bifida and the Association’s purpose. Now, Jordin and Rebecca could not be more grateful. to carry on their commitment to community service. The girls will strive to have an even more successful event than their brothers.

We thank you in advance for joining us in celebrating those who face the challenges that come with having spina bifida.  We appreciate any support you can provide and hope to see you in June!

The Board of Directors of the Spina Bifida Association of Western Pennsylvania

Programs & Services

The SBAWP offers a wide variety of programs and services that address the needs of individuals with spina bifida and their families. We place special emphasis on offering age appropriate programs and services that support each individual through their developmental milestones. Through every step of life’s journey, a person with spina bifida or other related disabilities can depend on the SBAWP to provide them with exceptional services and supportive programs that will help them navigate through their limitations and build on their strengths. Please take a moment to view all our programs and services.

Frequently Asked Questions

  • For more detailed information on Spina Bifida, please visit the Education section of our site.

What is Spina Bifida?

Spina Bifida is the number one permanently disabling birth defect in the United States. Spina Bifida is a neural tube defect and occurs when the central nervous system (brain and spinal cord) does not properly form during the early stages of pregnancy (within the first 28 days) – often before most women even know they are pregnant.

What are the statistics?

There are approximately 70,000 people with Spina Bifida currently living in the U.S. About 8 babies are born every day with Spina Bifida in the United States.

What causes Spina Bifida?

There is no known direct cause of Spina Bifida. Experts believe that genetics and a person’s environment might interact to cause Spina Bifida. It’s possible that genetics make someone susceptible to having Spina Bifida, but that something in the environment triggers the Spina Bifida to develop. Medical research has confirmed that there is a link between a woman’s folate level before pregnancy and the occurrence of Spina Bifida and other neural tube defects.

Who is at risk for having a baby with Spina Bifida?

Any woman who is capable of becoming pregnant can have a baby with Spina Bifida. People with a parent or sibling with Spina Bifida are 5 to 10 times more likely to have Spina Bifida than the general population, it’s impossible to know which women will have babies with Spina Bifida and which one will not – 95% of people with Spina Bifida have no family history.

Can Spina Bifida be prevented?

It is impossible to prevent a baby from having a birth defect, it’s only possible to reduce the risk. Studies have shown that the risk can be reduced when women take folic before and during the first three months of pregnancy. That is why it is recommended that all women who could possibly become pregnant should take 400 mcg of folic acid every day. Please be advised that folic acid does not stop all cases of Spina Bifida – there is still a chance that some babies will have it even when women take the right amount daily.

“In the United States, Spina Bifida occurs in 7 out of every 10,000 live births.”

It is the most common, permanently disabling birth defect. And while those who are born with this condition will face obstacles, there is still every opportunity for joy and happiness in their lives. We wanted to share this video we found online that really illustrates the love and incredible spirit those born with Spina Bifida possess!

We'd Love to Hear from You!