We are honored to have two Advisory Councils that guide our work. Their advice and guidance help shape the direction of the Spina Bifida Association.
Professional Advisory Council
We are honored by the involvement of the outstanding individuals who make up the Professional Advisory Council. Invitations to join the Professional Advisory Council are extended based on the expertise of an individual and represent every aspect of SBA’s work. The list of members and past members of our PAC is a “Who’s Who” of the leadership in the Spina Bifida community, and we are grateful to each one for their time, their energy and their leadership. We recognize that PAC members’ first obligation is to their patients and clients and appreciate that they are donating their limited free time to further the efforts of our organization and the wider Spina Bifida community.
Membership in SBAA’s Professional Advisory Council brings with it the fundamental role of representing the Spina Bifida patient population and the professionals who serve them. It is the job of each member of the PAC to engage in one or more of the following subcommittees:
- Science and Research (responsible for the continued update of the Guidelines for the Care of People with Spina Bifida and SBA conducted research)
- Education and Program (responsible for review and update of SBA educational materials and educational programs)
- Professional Engagement (responsible for engaging clinicians in the care of people across the lifespan)
- Transition (responsible for reviewing adult care models, engaging adult care providers, and assisting SB clinics with transition activities and models)
- Brad E. Dicianno, MD, Chair
- Timothy J. Brei, MD, FAAP, SBA Medical Director
- Richard C Adams, MD
- Patricia Olson Beierwaltes, DNP, RN, CPNP
- Robin M. Bowman, MD
- Paige Church MD
- Mark S. Dias, MD, FAAP
- Nienke (Prins) Dosa, MD, MPH
- Ellen Fremion, MD
- Toyia Greene, MSW
- Betsy Hopson, MPH
- Amy Houtrow, MD, PhD, MPH
- David B. Joseph, MD
- Suzanne Wilhoit McKee, RN, BSN
- Paula Peterson, APRN
- Jonathan Routh
- Samuel Rosenfeld, M.D.
- Kathryn Navarette Smith, RN, DrPH
- Konrad Szymanski, MD
- William O. Walker, Jr., MD
- Hadley Wood, MD
- Andrew Zabel, Ph.D., ABPP-CN
Adult Advisory Council
The Adult Advisory Council (AAC) of the Spina Bifida Association is an important voice for adults with Spina Bifida. Members who volunteer for the AAC share their insights and knowledge from their lived experiences with Spina Bifida to help inform and guide SBA’s activities and programs.
Members provide a diverse perspective on the needs and expectations of their peers, and point SBA to valuable community, national and even international resources. The service term is one year, and members may choose to reapply at the end of their term.
To benefit from as many adult perspectives as possible, SBA strives to include members from various areas of the country, and from diverse socioeconomic levels, ages, ethnicities, professions, and backgrounds.
The AAC features four distinct committees:
- Advocacy: members inform SBA’s advocacy efforts and in particular, seek to involve adults with Spina Bifida at the national level in the yearly Teal on the Hill advocacy event in Washington, DC.
- Healthcare for Adults: members of this working group collaborate to identify and decrease health service and information deficits for adults living with Spina Bifida.
- Peer Navigation: members seek ways to assist their adult peers with their questions about living with Spina Bifida, or connect them to other experienced adults or others who can help them address their needs.
- SB-YOU: members inform the content and presenters for SBA’s signature educational webinar series designed for and by adults with Spina Bifida.
- Amie Richards, MA
- Amy Saffell, TN
- Anna Ryan, CA
- Brian Malone, TX
- Cameron Williams, WA
- Chase Phillips, VA
- Dustin Newton, TN
- Jacqui Sawyer, TX
- Jay Dashefsky, AZ
- Karen Cushynr, NM
- Kristin Lovering/Marquis, NH
- Monica Still, PA
- Randi Brynteson, MN
- Robert Owens, NC
- Sarah Haywood, ME