When my wife and I first found out our son had spina bifida, we had no idea what the disability was. We live outside of Philadelphia, so when the Children's Hospital of Philadelphia took over in our specialty medical care, their social workers told us about the Spina Bifida Association of Delaware Valley. We quickly found SBADV to be a wonderful resource and a wealth of knowledge. They have created a community of spina bifida families that we can rely on for guidance and help. We have built lifelong friendships and the association’s funds go to help families that have real need. They are a non-profit doing a great service for the surrounding community, but, more than that, they are a network of people that will pick you up during your tough times and celebrate with you in your moments of triumph. We are so very blessed to have the Spina Bifida Association of Delaware Valley in our lives.

When I was a kid, my parents and I would attended SBADV meetings once a month in Media, PA. It was a time for parents of children with Spina Bifida to get together to talk about the issues they were facing regarding their child's needs. This enabled them to talk to other parents, medical professionals, and families going through similar situations and try to get answers. On a personal level, I enjoyed getting together with other children with SB. I grew up in a very rural area in NJ, and rarely got to socialize with anyone else like me until we went to these meetings. This was important because it helped us to know that we were not alone. My parents worked with the SBADV to counsel families in my area as they had been helped through the SBADV. They were able to give these parents firsthand knowledge and reassurance in dealing with the issues associated with SB and how to find resources to help them.

I’m a twenty-five year old female with Spina Bifida Myelomeningocele. I joined the Spina Bifida Association of Delaware Valley when I was a child through my childhood Spina Bifida clinic. Through the years, I have been to multiple SBADV events. These events include charity walks, holiday parties, and family fun gatherings. Being part of the SBADV has connected me to others in the Spina Bifida community. Thanks to the SBADV, I have made long term friendships with others who I can relate to. The SBADV has helped me understand that I’m not alone in my Spina Bifida journey, and has educated me on information I would not have known about Spina Bifida in order to help me better understand my own body. I really appreciate the support from the Spina Bifida Association of Delaware Valley. Without them, I would not have met such amazing people with journeys similar to my own.