1. GEMSS Training Materials for Higher Education Classes: From Creation to Evaluation NEGC Conference: April 7, 2016 Erika Baril, MA, CCC/SLP LEND Trainee

2. Connections with Leadership Education in Neurodevelopmental and Related Disabilities NEGC To promote and improve health and social well- being of those with inherited conditions GEMSS To improve systems of care, specifically around the educational system, for students with genetic conditions LEND To improve systems of care for children/youth with neurodevelop- mental disabilities and their families

3. Leadership in Action Project: Goals/Objectives – To assist in developing training materials (Learning Module for GEMSS) for use in higher education classes – To assist GEMSS project staff in getting higher education (special and regular) professionals to incorporate GEMSS into their curriculum: To introduce GEMSS website as a resource for teachers and students in education and related fields To create discussion about children with genetic conditions being involved in regular education – To assist in developing an evaluative survey

4. Project Outcomes: Creation of Learning Module – Supported development of Learning Module: Pre-work for students In-depth assignment, whole group activity, small group activity, and discussion questions Slide presentation on GEMSS to be used as part of whole group activity

5. Project Outcomes: Creation of Learning Module http://www.gemssforschools.org/resources/le arning-module http://www.gemssforschools.org/resources/le arning-module

6. Project Outcomes: Dissemination – Module launched on GEMSS website 1/15/16 – Higher education professionals alerted to launch

7. Project Outcomes: Dissemination Average time per session over 2 minutes

8. Project Outcomes: Implementation – Successfully piloted “Whole Group Activity” in LEND higher education class on 2/12/16 Presented GEMSS Overview PowerPoint Selected one genetic condition on website and “walked through it” Received commitment from at least a few faculty members that they will try out Learning Module with their students this semester

9. Project Outcomes: Evaluation Supported development of a survey around the utility of the GEMSS Learning Module

10. Project Outcomes: Evaluation Survey launched on GEMSS website 1/15/16 Follow-up interview planned with one faculty member in May to review her and her students’ experiences with using components of Learning Module in her class Survey results- TBD (pending Module use)

11. Questions?

12. Contact Information New England Genetics Collaborative Institute on Disability 603.862.3454 University of New Hampshire Karen Smith, Project Coordinator karen.smith@unh.edu karen.smith@unh.edu Ann Dillon, M.Ed, OTR/L, parent ann.dillon@unh.edu Erika Baril, LEND Trainee emb1018@wildcats.unh.edu