The Touchpoints Program is a partnership between SBAC and the Spina Bifida Clinic at Children’s’ Hospital Medical Center. The program provides a free packet of information including books, videos, and/or gift cards at various “touchpoints” in a child’s development. These packets target issues that occur at prenatal diagnosis, birth, when a child with Spina Bifida reaches school age, in their preteens, and when they become a young adult. Each part is designed to address the challenges that occur in lifestyle and education at each of these important states of life.
Adolescent and Young Adult Tele-Program is a way to connect with people from across the United States and discuss various topics and get advice and opinions on what works best for adolescents and young adults with Spina Bifida. The charity provides a nine week series “Setting Your Sight on the Future: Strategies to Get What You Need and Most of What You Want.” The series is a facilitated discussion for young adults that is centered on self-knowledge, inter-dependence, and building a foundation (tools, tips, skills, and resources). The sessions explore strategies for success in transition to and maintaining a healthy and productive lifestyle. In addition, the Tele-Program provides guest speakers throughout the year on various special topics. These experts at the “Special Topics” events speak on a single issue and share their knowledge with the audience in an informal setting.
Parent Outreach Program has volunteers welcome and share information with new parents who might need support on the following: information, community service referrals, role models, confidence, emotional support, additional perspectives, and opportunities to join with other parents of infants and young children for informal sharing.
The Young Family Support Group meets on the third Monday of every month at various Cincinnati Children’s Hospital Outpatient sites around the city. Parents gather over pizza to share information, experiences, and support in an informal setting. The group often invites adults with Spina Bifida or a family member of an older child with Spina Bifida to attend and provide their personal perspective on an issue pertaining to Spina Bifida. Additionally, a personal in the field may be asked to attend and share his or her knowledge in an informal setting. Children and siblings are encouraged to attend and engage in therapeutic play under the supervision of volunteers from the therapeutic division of Cincinnati Recreation Commission during the meeting.
The charity provides support for patients and their families during hospital stays at Cincinnati Children’s Medical Center. SBAC sends patients a Mylar balloon to brighten their day and wish them a speedy recovery. In addition, the charity offers meal tickets for parents who are staying at the hospital with their children. Two meal tickets are provided per week. Parents can use these tickets to order an entree, side, and drink from the same menu as their child. Meals are delivered to the room.
Spina Bifida Family Camp is an opportunity for adults and children with Spina Bifida and their families to experience a weekend camp in a fully-accessible environment. Activities include swimming in an indoor heated pool, fishing, canoeing, pontoon boat rides, pottery, hayrides, interactions with farm animals, arts and crafts, and a climbing wall with a zip line through the trees.
The Regional Spina Bifida Conference is held every two years by SBAC and it brings together individuals, families, and professionals. The conference is held in Cincinnati and provides programs for all members of the family, including daycare for children five years and young. Workshops and presentations at the conference focus on contemporary best practices in the health care of individuals with Spina Bifida, education and learning, financial planning, and quality of life issues.
SBAC provides scholarships that encourage participation in the following activities: camp or community recreation programs, primary school education support, national conference attendance, post-secondary education, and adapted driving classes or car modifications. Only one scholarship application may be submitted per person each calendar year. Grants are also provided on a limited basis to community programs serving individuals with Spina Bifida.