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Learn more about our
Keynote Speaker & Presenters and
View the Full Schedule Below
*exact times may be subject to change
Keynote Speaker - Donna Cruz Jones
Donna Cruz Jones was born with Spina Bifida in the
U.S. territory of Guam. She served two terms on the Spina Bifida Association National Board, and served multiple terms on the advocacy board for Duke Children's Hospital in Durham, NC.
Donna has worked as a staffer on Capitol Hill twice, worked for multiple political campaigns on the state and national level. She also served as the Americans with Disabilities for McCain Coalition Coordinator and was a Staff Assistant for Veterans for McCain Coalition.
In 2019, she was invited to testify before the House Appropriations subcommittee on Health Education and Labor as a representative of the Spina Bifida community.
Advocating for herself and those in the disability community is of the utmost importance, and she enjoys educating herself about the ADA, Medicare, and legislation pertinent to her community. Prior to her political experience, she served as head of customer service training for large retail organizations.
Morning Session Presenter - Christine Levy
Christine Levy is a speaker, educator, advocate, and entrepreneur who blends deep expertise with compassion to help families navigate the complexities of education and ensure every child has the supports they need to thrive. With 20+ years in public and independent schools, she has been a classroom teacher at The Hewitt School (NYC), Upper Elementary Coordinator at The Aaron School (NYC), and held district leadership roles in Rhode Island, including Assistant Director of Special Education and Multi-Tiered Systems of Support Coordinator.
In 2024, Christine expanded her vision by launching the Levy Educational Advocacy Academy, training a team of specialized advocates to ensure that every student regardless of ability receives the advocacy, support, and opportunities they deserve. This initiative includes the development of the Levy Educational Advocacy Toolkit, a robust resource of strategies, tools, and proven methodologies. Guided by best practices and grounded in state and federal law, the toolkit ensures effective, ethical, and legally sound advocacy.
Morning Session Presenter - Ashley Birch, CPNP
Ashley is a Pediatric Nurse Practitioner in the Department of Neurosurgery at Boston Children’s Hospital, specializing in the care of children with spina bifida and hydrocephalus. She serves as faculty with the Boston Children’s Hospital Global Health Program, focusing on strengthening pediatric neurosurgical nursing through education and international collaboration. Her leadership experience includes formally serving as Chair of the International Society for Pediatric Neurosurgery Nursing Committee, and as a former board member of SBAGNE.
Join as she shares with us “Growing Up with Spina Bifida: A Neurosurgical Guide to the Early Years,” an informative session exploring neurosurgical care and considerations during early childhood.
Afternoon Session Presenter - Dr Fiona Paul
Dr. Fiona Paul is a Nurse Practitioner and Coordinator of the Center for Motility and Functional Gastrointestinal Disorders at Boston Children's Hospital. She also serves as the gastroenterology provider for the Spina Bifida and Congenital Spinal Anomalies Canter and holds a faculty appointment at Columbia University.
Dr. Paul’s clinical and academic work focuses on gastrointestinal motility and defecatory disorders in children and young adults, with a particular emphasis on neurogenic bowel management and individualized approaches that promote continence, independence, and quality of life.
Dr. Paul will partner with Dr Jacobsen for a collaborative session exploring weight management and GLP-1 medications, including considerations relevant to individuals with complex medical needs.
Afternoon Session Presenter - Sarah Wells
As a Clinical Nurse Specialist in the outpatient spina bifida, cerebral palsy, primary care and complex care programs at Boston Children’s Hospital, Sarah brings more than four decades of nursing experience caring for children with complex medical needs. Her extensive clinical background in both inpatient and outpatient settings, and specialized certification as a Wound, Ostomy and Continence Nurse give her a unique perspective and significant expertise on the challenges our families and care teams face.
At this year's conference, she will share practical knowledge and guidance on wound care prevention - including helping families recognize risks, promoting healthy skin practices, and supporting best possible outcomes.
Afternoon Session Presenter - Dr Hatim Thacker
Dr. Thaker is a urologist at Boston Children’s Hospital, where he serves as Director of Urodynamics and Neurourology. His clinical expertise includes the care of patients with neurogenic bladder, as well as the treatment of genitourinary malignancies using advanced robotic surgical techniques.
Dr. Thaker's research focuses on advancing treatment options for neurogenic bladder, including the development of next-generation Botox therapies designed to improve care for patients with bladder dysfunction.
Join us as he shares his specialized expertise in urology, neurourology, and the evolving approaches to managing neurogenic bladder including using robotics in modern urology.
Saturday October 31st
Breakfast
Keynote Presentation - Donna Cruz Jones
AM Sessions:
Educational Advocacy & IEPS
Neurological Treatment & Care
Lunch
Afternoon Sessions:
Wound Care & Prevention
Weight Management & GLP-1s
Advancements in Urological Techniques
Panel - Across the Lifespan
**exact times may be subject to change
Access our Virtual Registration HERE!
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