Children’s Hospital of Philadelphia’s (CHOP) Spina Bifida Program Advisory Board collaborates with the clinical team to empower and educate patients and their families. The board is made up of family members of patients with spina bifida and young adults living with spina bifida. It serves as a trusted voice for families to advocate for their children and to recommend improvements to the program. As a vital part of our program’s success, board members partner closely with staff to help plan family events, offer perspective on program needs, and ensure that our services align with the Spina Bifida Association’s Clinical Guidelines. 

Patients and families are the most knowledgeable members of the care team. The Advisory Board provides a structured forum where parents and caregivers can relay their experience directly to the clinical team. The goal of the Advisory Board is to enhance the CHOP Spina Bifida Program, improve the overall patient and family experience, and strengthen our community. Board members help bridge the gap between families and providers — sharing ideas, offering feedback and ensuring that care remains family-centered and consistent with national standards. Together, the board works to strengthen community connections and create meaningful experiences for families living with spina bifida. 

If you are passionate about advocacy, collaboration and making a meaningful impact, we welcome your involvement. Board meetings are held monthly on Tuesday evenings at 8 p.m. 

Board member responsibilities include:

• Helping to provide financial assistance — including medical equipment, incontinence funding, scholarships, camperships and other direct patient aid — for Spina Bifida Program patients and their families.
• Organizing fundraising events, applying for foundation grants, and soliciting individual and corporate donations to fund financial assistance to Spina Bifida Program patients and families as well as program development.
• Developing patient and family education and support programs, and coordinating their implementation.
• Contributing input on program improvements, family engagement opportunities and other initiatives that elevate the overall quality of care.

If you are interested in contributing to our mission to shape the Spina Bifida Program, we hope you’ll join us. Please download and fill out this application (Word document)*, and return it via email to DAMICO@chop.edu.

*If you have trouble downloading the application, copy this link https://www.chop.edu/sites/default/files/2026-01/chop-spina-bifida-program-advisory-board-application.doc and open it in a new web browser window, or check your download folder and settings. Email DAMICO@chop.edu with any questions.