A Note from the Director

A Note from the Director

In 2022 our organization theme was, “YOU, are the reason for our celebration!” And celebrate YOU we did! We commemorated 50 years of serving those with spina bifida, recognized 50 influencers who played significant roles in the organization and quality of life of people with spina bifida, we walked & rolled in-person for our 22nd annual event. We grew once again, adding northeast Ohio to our service area, bringing our total impact to 105 counties in Ohio and West Virginia.

We began 2022 by slowly returning to in-person events with our Spring Family Breakfast, followed by the Kids Fly, our Adult Dinner Club, the Walk & Roll, and ending strong with visits from the Big Guy in red at our holiday parties in northeastern Ohio, Cincinnati, and West Virginia. The pandemic has influenced programming for the past two years and while we felt its effects in 2022, we came to YOU, our stakeholders, to help shape our programming for 2023. You asked for more family-centered events that include education opportunities with your peers and your children as well as activities that bring teens and adults together with younger families; the “Learn, Lunch, and Laugh” program is result of your input. We look forward to introducing this and other new programming in 2023. Older programs with lower attendance will also be dropped next year as a result of your feedback.

SBC staff have worked very hard together with our partners at the Spina Bifida Center at Cincinnati Children’s on our transition research project. As a result, we have been invited to participate as a plenary session presenter at the 2023 SBA World Congress in March. We will be sharing our findings related to the Barriers and Facilitators to Self-management, Self-advocacy, and Community Inclusion for Adolescents and Young Adults with Spina Bifida. Rhonda and Diane will be attending and representing SBC at this international research symposium. We have recently applied for an additional grant that will allow us to pilot an intervention for this important research and hope to hear good news before the end of 2022!

Thank you to our Board of Directors and committee members who provide guidance for our continued sustainability.

Thank you to Diane Burns, our Program Manager for her experience, support, and wisdom; to Alexis Allen, our Communications Assistant who keeps our social media up to date and leads one of our adult programs, Color, Converse, and Craft as well as facilitates our Adult Hangouts! I am lucky to get to work with these two ladies.

Personally, I am blessed with a husband and family who understand my passion for leading SBC. Each of YOU remind me how important it is to do something that you love…and for that I say, “THANK YOU!”