2. GEMSS Background GEMSS- Genetic Education Materials for School Success Project of the New England Genetics Collaborative(NEGC) through the University of NH’s Institute on Disability (IOD) Website’s been up and running since 2012 “Hits” from all over the world

3. GEMSS Overview Online free resource – Also, is mobile optimized- works on your cell phone! 35 + Common and rare genetic conditions – Autism, Down Syndrome, Fragile X – 22q deletion, PKU, Williams Both a teacher and parent perspective – Not just genetics, but what a child needs to be successful in school Option to dig deeper about genetics

4. What You Need to Know Audience: teachers, parents, school nurses, staff Learn about the condition, take away fear! Learn how the condition may/may not impact 6 areas and strategies to help: – Medical/Dietary – Education Supports – Sensory/Behavior Supports – Physical Activity, Trips and Events – School Absences and Fatigue – Emergency Planning

5. How Schools Can Use GEMSS To increase teacher/school personnel knowledge and comfort in how to best support these children To provide tips and strategies to promote children’s success in inclusive/regular ed classroom To help support children who don’t have a known diagnosis To promote partnerships with families

6. Specific Ideas for Applying GEMSS Developing lesson plans Planning for snacks and lunch room Modifying physical activity/education Developing an emergency plan Training staff Preparing for meeting school staff or parents Creating/amending the IEP or 504 plan Advocating with administrators

7. Additional Info on GEMSS Website “General Tips and Strategies”– for undiagnosed children http://www.gemssforschools.org/conditions/undiagnosed/general-tips http://www.gemssforschools.org/conditions/undiagnosed/general-tips Transition planning – educational and health care http://www.gemssforschools.org/transition/transition-landing http://www.gemssforschools.org/transition/transition-landing Birth-to-3 and special education plans- IFSP, IEP, 504 https://www.gemssforschools.org/faq-instructions/ifsp-iep-504 https://www.gemssforschools.org/faq-instructions/ifsp-iep-504 Frequently asked questions http://www.gemssforschools.org/faq-instructions/default http://www.gemssforschools.org/faq-instructions/default And more…

8. Credibility of GEMSS: Process for Including Information on GEMSS Website 1.Content researched and compiled by a genetic counselor with a background in education 2. Content reviewed and edited by some or all of the following: – Geneticist – Inclusion specialist – Parent – Teacher – Education and Outreach Work Group – Condition-specific advocacy groups

9. Credibility of GEMSS Continued… 1.Information obtained from various general sources such as the National Library of Medicine, the National Institutes of Health, the Genetic Alliance and genetic texts 2.Parents and professionals review, edit and update information on conditions – “keep it real” and accurate 3.Feedback given about site is appreciated (e.g., more genetic conditions have been added)

10. 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