Research

Individuals born with Spina Bifida  today are expected to live into adulthood and more than half of the 166,000 people living with Spina Bifida in the United States are adults. Yet, little is known about the interventions that are most effective and impactful in the lives of this population, of both adults, parents, and their children. Integral to the mission of the Spina Bifida Association is pursuit of quality,  comprehensive, community-centered research, and data. Whether you are a researcher who would like SBA support,  a person living with Spina Bifida, or a caregiver of someone with Spina Bifida we would like to facilitate your participation and engagement in  research initiatives.

Spina Bifida Association (SBA) Research Advisory Council (RAC)

The SBA RAC is composed of parents, individuals with Spina Bifida, and healthcare professionals who are experienced in research methods. The RAC provides resources and guidance to the research efforts of the SBA. RAC members provide expertise; diverse knowledge of constituent perspectives; connections to local, national or international resources, colleagues or peers; philanthropic support; or other forms of assistance.

The RAC follows SBA’s Principles of Research:

  • Evidence-based research to improve the lives of people living with Spina Bifida.
  • Research that complements the Spina Bifida Community-Centered Research Agenda: Bowel Incontinence; Mental Health; Self-Management; Transition; Urinary Incontinence; Weight Management and Weight-Related Behaviors.
  • Research that underscores the core values of SBA.
    • Visionary Leadership: Lead with hope and serve with passion toward the vision for the future.
    • Integrity: Pursue SBA’s mission with honor, fairness, and respect for all individuals while acting as a good steward of the SBA mission and the public’s trust.
    • Commitment to Excellence: SBA aspires to the highest standards and serves as a champion for the SB community.
    • Collaboration: SBA values mutual respect and honesty as the cornerstone of all relationships, employing teamwork and transparency.
    • Effective Voice: SBA works together to affect change and encourage knowledgeable advocacy.
    • Inclusiveness: SBA embraces varied cultures, ethnicities, and backgrounds and invites diversity of thought, innovation, and creativity.

The SBA RAC is composed of parents, individuals with Spina Bifida, and healthcare professionals who are experienced in research methods. The RAC provides resources and guidance to the research efforts of SBA.

RAC members provide expertise; diverse knowledge of constituent perspectives; connections to local, national or international resources, colleagues or peers; philanthropic support; or other forms of needed assistance. SBA resources supporting the RAC include:

– Judy Thibadeau, RN, MN, SBA Director of Research and Services
– Juanita Panlener, SBA National Resource Center Manager
– Laura Carlson, PhD, MS, SBA Research Coordinator

Ummekulsum (Uzma) Abdulbaseer, BS ([email protected])
Young adult with myelomeningocele Spina Bifida and hydrocephalus.
Uzma has a BS in Integrated Health Studies and a minor in Disability Human Development.
RAC research working group: Mental Health

Laura Carlson, PhD, MS ([email protected])
Adult with Spina Bifida and SBA Research Coordinator for the RAC
Retired professor of Law and Courts and Political Science, University of Arizona.
RAC research working groups: Self-Management, Transition, Weight-Management and Weight-Related Behaviors

Linda E. Krach, MD ([email protected])
Pediatric Rehabilitation Medicine/Physical Medicine and Rehabilitation
Physician and Clinical Researcher
Medical Director, Spina Bifida Clinic Gillette Children’s
RAC research working groups: Bowel Incontinence, Transition, and Self-Management

Michele Polfuss, PhD, RN, CPNR-AC/PC, FAAN ([email protected])
Associate Professor-College of Nursing University of Wisconsin – Milwaukee
Joint Research Chair in the Nursing of Children ([email protected])
Children’s Wisconsin (CW)/UW-Milwaukee)
RAC research working group: Weight Management and Weight-Related Behaviors

Asma A. Taha, PhD, CPNP-PC/AC ([email protected])
Pediatric Nurse Practitioner, Oregon Health & Science University
RAC research working groups: Bowel Incontinence and Urinary Incontinence

Jennifer Tudor, PhD ([email protected])
Associate Professor of Biology at Saint Joseph’s University
RAC research working groups: Mental Health, Self-Management, Transition, and Weight Management and Weight-Related Behaviors

Sara Beck, ([email protected])
Parent to a young adult with Spina Bifida
Special Education Teacher-Wilmac Special Education Unit
RAC working groups: Self Management and Weight Management and Weight-Related Behaviors

Denise Garza, ([email protected])
RAC research working groups: Mental Health and Self-Management

Rebecca Nieters ([email protected])
RAC research working group: Urinary Incontinence

Katie M. Schmidt, MSN, CRNP ([email protected])
Fetal Spina Bifida APN Program Coordinator
Richard D. Wood Jr. Center for Fetal Diagnosis and Treatment
The Hub for Clinical Collaboration, Division of General, Thoracic, and Fetal Surgery, Children’s Hospital of Philadelphia
RAC research working groups: Mental Health and Self-Management

Linda Thunn, PT, DPT ([email protected])
Doctor of Physical Therapy at DMG Children’s Rehabilitative Services, Phoenix, Arizona
RAC research working groups: Transition and Weight Management and Weight-Related Behaviors

Alexander Van Speybroeck MD, MPH ([email protected])
Attending Pediatrician, Division of General Pediatrics AltaMed Clinic
Medical Director, CHLA Spina Bifida Program
Medical Director outpatient program CHLA Center for Global Health
Co-Director CHLA Global Health Program and resident IMPACT Tract
Children’s Hospital Los Angeles
Associate Professor of Clinical Pediatrics
University of Southern California, Keck School of Medicine
Director of Pediatrics at Shriners Medical Center for Children Pasadena

Virginia Briggs, PhD ([email protected])
Epidemiologist/Parent of young adult with Spina Bifida
Associate Professor of Public Health, Massachusetts College of Pharmacy & Health Sciences
RAC working groups: Mental Health and Bowel Incontinence

Maryellen S Kelly, DNP, CPNP, MHSc ([email protected])
Pediatric Nurse Practitioner
Assistant Professor, Duke University Neurogenic bladder and bowel
RAC working groups: Bowel Incontinence and Urinary Incontinence 

Monique Ridosh, PhD, RN ([email protected])
Associate Professor, Marcella Niehoff School of Nursing, Loyola University
RAC working groups: Self-Management and Transition

Robert BT Trierweiler, MS, CRC, LCPC ([email protected])
Vocational rehabilitation counselor, Licensed Clinical Professional Counselor (LCPC) and iCertified Rehabilitation Counselor (CRC)
RAC research working groups: Transition and Mental Health

Kerry O’Neill Wallace, MBA ([email protected])
Adult with Spina Bifida and Healthcare worker
Director, Office of Academic Affairs Northwell Health
RAC research working groups: Transition and Weight Management and Weight-Related Behaviors

Hubert S. Swana, MD ([email protected])
Pediatric Urologist with the Orlando Health Arnold Palmer Hospital for Children Urology Center & Director of Pediatric minimally invasive and robotic surgery. Urology advisor for the University of Central Florida School of Medicine and co-director of pediatric urology training for the University of South Florida urology residency.
RAC research working groups: Urinary Incontinence and Bowel Incontinence