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Spina Bifida Association of Western Pennsylvania

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Nonprofit Overview

Causes: Birth Defects & Genetic Diseases, Camps, Health, Job Training, Nerve, Muscle & Bone Diseases, Sports, Vocational Rehabilitation

Mission: The Spina Bifida Association of Western Pennsylvania is committed to improving the quality of life for people with spina bifida and their families, by providing a continuum of direct service, education and advocacy.

Results: The Spina Bifida Association of Western PA (SBAWP) is a nationally recognized, charitable, nonprofit provider of information and direct services to children and adults with spina bifida and their families. The organization annually serves nearly 1000 children, teens and adults living in 28 counties within Western Pennsylvania and portions of New York, Ohio, and West Virginia. Founded in 1969 as a parent support group, the SBAWP has grown and evolved to offer a variety of programs and services that span a lifetime. Participants have access to SBAWP programs and activities regardless of income and/or ability to pay

Target demographics: Individuals of all ages with spina bifida and other disabilities and their families

Direct beneficiaries per year: over 1000 individuals and their families

Geographic areas served: Western PA and portions of New York, Ohio, and West Virginia

Programs: Blueprints, Family School Partnership, Firefly Camps and Retreats, the Gatehouse, Community Services, and Wellness

Community Stories

23 Stories from Volunteers, Donors & Supporters

Volunteer

Rating: 5

I have volunteered a few times at Spina Bifida and every single time, I never wanted it to end. Everyone there from the young people to the staff to the managers are extremely enjoyable. They would always go out of their way if I needed assistance with a task. If they are willing to do so much to help me volunteer, then I know the care they are giving to the young adults must be incredibly off the charts.

Board Member

Rating: 5

My experience with the Spina Bifida Association of Western PA is as a volunteer board treasurer. For several years I have witnessed the compassion and tireless efforts of the administration to raise funds so that people with spina bifida could have the opportunity to go to Summer camp or a Fall weekend retreat. It may not sound like a big deal, but when you look forward all year long to being with your friends who don't look at you or treat you like you're different and you can be in a safe, fun environment, it's a huge deal. These same people make sure that the necessary care and education is provided to people with spina bifida in the community so that they can increase their quality of life and live each day with dignity. This organization fills a vital and critical role in this community.

Volunteer

Rating: 5

I have been a volunteer at SBAWP for over 10 years. During that time I have observed a consistently high level of commitment and caring from the staff. Relationships between staff and clients are like family. I have seen staff go above and beyond on a regular basis, volunteering their own time and resources outside of working hours to make sure that the means exist to help people with spina bifida and related disabilities to thrive. To say they really care is an understatement. These people give their hearts and souls to help real people with very challenging disabilities have better lives.

Previous Stories

Volunteer

Rating: 5

I have been a board member for six years. I am continually impressed and humbled by the people we serve and the dedicated staff members who carry out the association's mission to improve the quality of life for people with spina bifida and their families. People born with spina bifida deal with a particularly difficult and complicated set of health and personal issues, and I cannot find the words to express how hard I see those people working every day to deal in a positive way with the challenges that they face. They are driven to earn some independence and be productive, contributing members of our community. Our staff members are committed to helping them in every way possible to learn, grow, and experience the important things in life like going to school, building solid friendships and relationships, becoming more self-sufficient, gaining employment, and finding a place to live. Like many non-profits, our organization is finding it more difficult to get the funding we need to fulfill our mission. Our staff members have and continue to make personal sacrifices to make sure that even with less funding we stay focused on helping our clients in the best way possible. In these past six years I have met many real-life angels. They are the people we serve and the staff who serve them. I cannot think of people more deserving of a higher level of support from the community.

Volunteer

Rating: 5

I've had the privilege of becoming acquainted over the years with a number of employees, volunteers and participants in the programs offered by Spina Bifida Association of Western PA. I've never failed to be impressed by the dedication and integrity of those who administer and oversee this group. They lead by example and serve with excellence as they train their volunteers to join them in treating each person with dignity and kindness, and seek to provide a community of caring, fun, growth and friendship for the children and adults they serve.
They are tireless in their efforts to provide many opportunities for those they serve to get out into their communities where they, too, are helped to find ways to serve. There are also craft programs, outings and summer camps which allow each person to engage at their own level and be recognized and encouraged for their achievements.

Volunteer

Rating: 5

I am one of many who volunteer at SBAWP. This is a committed, strong group dedicated to making life better for those with spina bifida. I have seen them find jobs for people so affected, help clean the living quarters of folks who can not take care of themselves -both people in their residences and off on their own. I have seen them help people find and buy or rent independent living facilities, do job coaching and training, help people with their college applications and college studies -teach young people how to study, how to improve their learning skills, how to interview for a job, and how to interact with emergency rooms and doctors, teach them how to shop, how to cook, how to get around and use available transportation. They are also great about getting these young people out and into the community by helping them become volunteers at animal friends and other charities. They arrange for trips to various culture and entertaining events, such as trips to athletic games, the zoo and Kennywood. They also arrange summer camps with many activities and a very important element of their offerings are the respites -weekends for the kids that give their parents a much needed break - many have told them their support relieved a lot of stress on the family. Further they have and will visit a child's school to help teachers prepare for the needs of children with SB so that they have a more rewarding school experience.

I love these people. They are incredible folks, and their board members and managers often pay for many of the things the kids and the organization need. They are a selfless group of people with a lot of integrity.

God bless them and thank them for their efforts

Previous Stories

Volunteer

Rating: 5

What an incredible organization, doing great work to help children, young adults, parents, and schools. I have volunteered with this organization for seven years and every day I continue to be impressed with their work. Key members of the staff have been recognized by the Pennsylvania House of Representatives for their work. There have been days when funds are short and staff members themselves donate to help the kids, and the kids are great – they are inspirational, hardworking, artistic, studious and more independent than many people I have met who are not challenged by this condition. I love to see how they find creative ways of getting along like plowing their laundry basket with a their wheelchairs, placing mirrors over their sinks and stoves so they can see into the recesses. This is a special place with special people.

Board Member

Rating: 5

Spina Bifida Association of Western Pennsylvania (SBAWP) has and continues to be an important resource for my wife and I along with our daughter who was born with spina bifida and is now 17 years old. SBAWP offers a number of programs for families with loved ones with spina bifida from birth through adulthood. For our family, SBAWP was a tremendous advocate early in our daughter's life by assisting with the individualized education program (IEP) when she started school and continues as she prepares to graduate from high school and move onto college. Their camp/weekend retreat program not only offers the youth and adults the opportunity to enjoy camp like all the other kids but also gives them the opportunity to demonstrate the ability to live independent from their parents. Not only does the camp/weekend retreat program offer the parents' comfort in allowing their child with spina bifida to live independent (like college), it also gives the parents a needed respite. For my daughter, SBAWP camp is her favorite week of the year. SBAWP also offers a wellness program and seminars that give families a forum to hear and talk to local medical professionals and medical suppliers. As you can see, SBAWP has been and remains a blessing to our family. Thank you SBAWP for caring for our children.

Joe B.1

Board Member

Rating: 5

The Spina Bifida Association is a truly wonderful organization that lends valuable assistance to some extraordinary young adults who are most worthy of assistance !!

Everyone associated with Spina Bifida is fully dedicated and give of their hearts and soul to help in any way possible !!

God bless you all !

Joe Bucci

General Member of the Public

Rating: 5

SBAWPA has impacted my life in a very positive way. We became involved with some of their fund raising activities and made life long friends with staff and the people they serve.

1

Client Served

Rating: 4

I have come a long way because of the spina bifida association. When i moved to the Gatehouse I didn't have much confidence i could be independent. I was challenged to do things ive never done before and i didnt always like it but im so thankful for everyone who pushed me outside my comfort zone. I would not be living on my own if it wasnt for staff at the gatehouse program.

Board Member

Rating: 5

I've been a volunteer on the board for the past year and a half. It has been amazing to witness the meaningful impact SBAWP has on improving the lives of it's members. It is even more impressive given the uncertainty in the managed care environment and operating on limited resources.

Board Member

Rating: 5

My experience as a board member has been phenomenal. Rarely do you have such a dedicated group of staff and leadership come together to reach a common goal - improve the quality of life for individuals with spina bifida living in our community. I encourage all how read this to reach and get involved as you will directly see how your participation impacts these extraordinary men and women.

General Member of the Public

Rating: 5

This organization goes above and beyond in supporting the Spina Bifida community. The staff is welcoming and patient. Spina Bifida of Western Pennsylvania is able to provide excellent guidance in explaining diagnosis, causes and treatments.

Professional with expertise in this field

Rating: 5

Have been involved with SBAWP for many years and having many opportunities to grow as a professional, but the participants are amazing and are the core! And are amazing individuals

1

Professional with expertise in this field

Rating: 5

I have worked for the Spina Bifida Association of Western Pa for fifteen years. Our clients are continously amazing me as they focus on their abilities rather than their disabilities. It is a joy to see them succeed in things such as obtaining and keeping a job, volunteering at local animal shelters and hospitals, driving a car, grocery shopping, attending classes at college, living on their own in an apartment, and all of the activities of daily living. The clients It is nice to see the friendships formed and kept for years. The staff is filled with dedicated people who truly care about the clients and are always striving to do their best for them. Spina Bifida Associationof western PA is unique in the services it provides and clients have come from all over the United States to attend the Gatehouse Program and then to living out in the nearby communities. It is a lifechanging program not only for the clients but for me as well

Client Served

Rating: 5

I am both a client served (as a parent of a young child with SB) as well as a Board Member...but I was a client first! SBAWP provides quality of life programs for the SB population (and even related diagnoses!). People with SB have so many medical needs, but quality of life is just as important in overall health and well-being. SBAWP fills the gap by providing camps, retreats, a caregiver support group, a network of support, parent school partnership, etc. On top of all this, the employees that work for the non-profit are exemplary. Their selflessness and dedication to the SB population is admirable to say the least. I know they go above and beyond what they have to do and even what they get paid to do...all because they believe in their cause.

Volunteer

Rating: 5

I have had the opportunity to work at the summer camp that they provide for the adults , youth, and teens that provide them an opportunity to be themselves. It also helps them to see their friends that they do not see during the year. It is a lot of work but I it well worth it to see the smiles and laughs of all of the campers that attend the summer camp. It provides them with different activities that make memorable memories with all that work there and the campers as well.

Professional with expertise in this field

Rating: 5

SBAWP provides services that are essential and allow individuals to have a quality of life no matter their age. Individuals served through the association to succeed to live independently, maintain friendships, and participate in activities through out the year within the Pittsburgh community, with the associations assistance.

Professional with expertise in this field

Rating: 5

The Spina Bifida Association of Western PA is a wonderful non-profit organization. They run programs for individuals of all ages. Children and adults get to experience camp like anyone else would. Their health needs are no barrier for the camp, FireFly Camp and Retreats. The association also provides a facility for individuals transitioning to independent living, which assists in things like searching for employment. The organization's Blueprints Program offers very young children with Spina Bifida the opportunity to interact with one another and give parents/family time to interact with one another. The Spina Bifida Association can also be used for questions/support in the education process with your child through the Family-School Partnership program. Lastly, they help community clients, through the adult community services program, in their daily activities, if needed.

Volunteer

Rating: 5

This organization provides many great services to individuals in need. From transitional dorm-style and independent living to summer camps and weekend retreats, this is an opportunity for each client to grow. Spending one minute with one of the clients will show you how rewarding it is to volunteer for or donate to this organization.

Volunteer

Rating: 5

The experiences at the association have proven to be ones of great professional and personal growth. It is rewarding to volunteer at an organization that is committed to such wonderful individuals and strive to create life long memories.

Volunteer

Rating: 5

They are a fabulous source of support, care and education for all ages of people with Spina Bifida!
They provide opportunities to clients that are offered no where else! Well worth the investment!