2. Envisioning the Future - How GEMSS can Help! NH Family Support Conference May 2, 2015 Ann Dillon, M.Ed, OTR/L, parent – UNH IOD Kim Tautenham, parent NH Leadership Series Action Group: Carrie Duran, Laurie Giguere, Denise Gray, Kathy Dayotis, Rob McSheehan, Paula Garvey, Diane Andrews, Sarah Boddy-Snee

3. Agenda  Introductions  Panel  Poll audience  Video of GEMSS  Slide Show as Intro  Parents Discuss GEMSS use  Audience Condition and live walk thru site  Questions

4. VIDEO http://www.gemssforschools.org/default/promotional_materials

5. Brianna Rose Dillon 1985-2010

6. GEMSS Overview On line free resource – Also, is mobile optimized- works on your cell phone! 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 1500 unique visitors/month – Peak days attributed to Parent Ambassador efforts

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

12. Specific Ideas for Applying GEMSS* Develop lesson plans Preparing for meeting school staff or parents Creating/amending the IEP or 504 plan Staff training Help planning snacks and lunch room Modifying physical activity/education Developing an emergency plan Advocating with administrators * Find this link on the home page at bottom

13. Additional Info on GEMSS site ESS and special education services The Chart – for undiagnosed children Transition Planning - Medical and Educational Additional resources

14. Parents Play Critical Role in GEMSS Review and edit conditions – “keep it real” Give feedback on site Parent interviews for “Meet a Child” Parent Ambassadors NH Leadership Series- Action Group ( Partners in Policymaking) DISSEMINATION!

16. Feedback – Very Positive! “This is a beautiful project, the information being so easy to access and organized so neatly can be incredibly informative not only for teachers, or parents, but other children to understand the differences and needs of others without being overly complicated or long to read.” “I am so excited that you have this information written in a very teacher-friendly language.” Thank you for this wonderful website! We are from Australia, and this is the first website that we've found to provide any real and practical advice about how to transition our son from preschool to kindergarten. The information you've provided is going to go a long way in helping him and his teachers to provide a sustainable and nurturing school environment for him.

17. Live, from Bartlett NH! Presenting the multi-talented GEMSS Action Group!

18. NH Leadership Series (Ann) NH Leadership Series – 9 month program for parents and people who have disabilities to develop their leadership skills. – Application available today –deadline extended to May 10. – Contact any one of us for more info This year, formed a partnership with GEMSS Outcome: – GEMSS Action Group formed – Tremendous success in getting the word out on GEMSS

19. Parent Ambassador Kim Tautenhan Daughter has 22 q Pilot Program in Spring 2014 –spread in networks, schools in district, medical circles, etc. 4 additional parents – Fall, 2014 – Oct 15 – Launch Day- Highest Day views Ever! 339 Views 19 countries All likely from those 4 parents!

20. Parent Ambassadors PERSONAL LARGER COMMUNITY INNER CIRCLE & TEAMS

21. NH Leadership Action Group As a Parent: Carrie My daughter’s IEP process Katie’s one-on-one aid Special Medical Services Education and awareness within my family Any questions please contact: Carrie Martin Duran mikmommyof3@hotmail.com

22. NH Leadership Action Group Local Presence and Promotion - Denise Community Outreach School Districts Local Support Groups Social Media Friends & Family

23. Action Group – Wider Community - Laurie Summary of how group spread the word to the larger communities FAMILIES MAKE IT HAPPEN! Contacting Local and State Agencies – State Family Support Council – Local Family Support in Area Agencies – State School Nurses Association – Department of Education – local and state Future – Partners in Health – Local and state continued – NH Family Voices – Lending Libraries – Other state agencies – PIC

24. Live walk through the site Condition – audience picks! – Demo on site Explore other features on site – IEP/IFSP/504 plan – Carrie – Frequently Asked Questions – Laurie – Resources- Denise – Transition - Laurie

25. How parents can use GEMSS Take info to doctors Take to school/ESS team Meet with school nurse Bring to other schools in your SAU Ask school to put on WEB site. Take aways: Article, magnets

26. Questions?

27. Additional information GEMSS link www.gemmsforschools.org Exceptional Parent Magazine article http://www.negenetics.org/work-groups/education-outreach/products- and-publications or http://www.negenetics.org/work-groups/education-outreach/products- and-publications https://www.negenetics.org/sites/default/files/libraries/dem_products/ex ceptional_parent_gemss_march2014.pdf https://www.negenetics.org/sites/default/files/libraries/dem_products/ex ceptional_parent_gemss_march2014.pdf Posters http://www.gemssforschools.org/default/promotional_materials This project is supported by the New England Genetics Collaborative, funded by Health Resources and Services Administration, grant no. H46MC24093.

28. Contact Info New England Genetics Collaborative Institute on Disability 603.862.3454 University of New Hampshire Ann Dillon, M.Ed, OTR/L, parent ann.dillon@unh.edu Karen Smith, Project Coordinator karen.smith@unh.edu karen.smith@unh.edu

29. Contact Info: Family Members NH Leadership Series Graduates Kim Tatutenhan: mikmommyof3@hotmail.commikmommyof3@hotmail.com Laurie Giguere:lgiguere@comcast.netlgiguere@comcast.net Denise Gray: dandtgray@metrocast.netdandtgray@metrocast.net Carrie Duran: mikmommyof3@hotmail.commikmommyof3@hotmail.com Kathie Dayotis: Kathleen.Dayotis@timberlane.netKathleen.Dayotis@timberlane.net Rob McSheehan: mcrobjudy@yahoo.commcrobjudy@yahoo.com Diane Andrews: Diane.Andrews@crl.comDiane.Andrews@crl.com Sarah Boddy-Snee: ksacsnee@gmail.comksacsnee@gmail.com