Spina Bifida Global Learning Collaborative
The development of a network to educate the next generation of clinicians, researchers, and advocates
Jessica Stockman¹ PT, MS, Semhal Getachew Teka¹ MD, MPH, Mary M Locastro² MD, Sarah Ibrahim¹ MPH, Melinda Rocchi¹,⁷ MD, MPH, Nienke Dosa² MD, MPH, Jonathan Castillo³ MD, MPH, Ann I. Alriksson-Schmidt¹ PhD, MSPH, Yakob S. Ahmed⁴ PhD, Elly Kutwa⁵ MD, Heidi Castillo³ MD, Patricia O’Neill⁴, Silvana Contepomi⁶ PT.
Background
The 2023 Spina Bifida (SB) World Congress’s Global Health symposium served as the official launch of the Spina Bifida Global Learning Collaborative (SBGLC), a transnational, multi-disciplinary group of advocates, graduate students, clinicians, and investigators dedicated to SB-related global health education from numerous parts of the world.
Aim
The SBGLC aims to educate future researchers and clinicians/advocates on the professional standards developed by the major international organizations in SB, to enable knowledge exchange about treatments or care systems, what may or may not have worked in different contexts, and to connect people and science where needed.
To date Result – through monthly zoom-meetings the SBGLC has inspired several activities around the globe and welcomes anyone with an interest in SB care with a social justice lens and in a global health framework.
Activities and Achievements
Through monthly Zoom meetings, the SBGLC has inspired several initiatives around the globe. The activities are presented below in chronological order.
The SBGLC has also provided students and trainees with the opportunity to present their work at international meetings.
Disability Day – Lund, Sweden
Core theme: Exploring the intersection of disability and health through lived experience.
Focus areas: Promote inclusion, advocacy, and critical reflection on how disability is addressed or overlooked in public health education and practice.
Goal: To foster a more inclusive and representative public health curricula across institutions.
Nov 2023
Spina Bifida Association of New York State conference, July 2024
Spina Bifida Association of New York State conference
International Federation for Spina Bifida and Hydrocephalus
Where students and trainees had the opportunity to present their work.
Kuala Lumpur, Malaysia. Oct 2024.
After Care Needs Assessment
Needs Assessment Tool Development: Collaborated with Reach Another Foundation (Ethiopia) to design a data collection tool for the study “Assistive Technology Needs and Associated Factors among Children with SB in Ethiopia.”
Local/Global Perspectives on Wheelchair Provision: Theory and Practice
Local/Global Perspectives on Wheelchair Provision: Theory and Practice – Spina Bifida Center of Central New York, Spina Bifida Association of New York State, Syracuse New York, USA. Two-day workshop for community therapists. Combined hands-on learning and system-level understanding. Utilized the WHO Wheelchair Provision Guidelines (2023) – Global Access to the Appropriate Wheelchair.
March 2025
Future work
Generating ideas for future work, research, and development of a comprehensive SB curriculum tailored for global health students.
Publications
Click on the publication links that lead to external pages with information.