PROGRAM SUBJECT TO ADDITIONS OR CHANGES *** CHECK IRSF REGISTRATION DESK FOR PROGRAM AND ROOM UPDATES ***

Transcription

1 DAY TIME SESSION SPEAKER SESSION TYPE/LOCATION Thursday- Thurs: noon-7pm Fri: 7:30am- 5:30pm Sat: 7:30am- 6pm Registration/Help Desk IRSF and volunteers Thursday 3pm-4pm Pre-Conference ipad Workshop ($20) Art Together activity for children with Rett while parents attend the Workshop Pati King-deBaun and Judy Lariviere Volunteers Pre-register online rettsydnrome.org No fee Thursday midday - Noon-5pm (Thurs) 8am-5pm (Fri/Sat) Exhibitors and Information Booths: Assistive technology, adaptive equipment, fundraising, clinics and more; Bookstore: Awareness items, educational materials. (Silent Auction tables setup Friday through Tribute Reception only) Exhibitors and IRSF Bookstore volunteers Exhibitor Arena Thursday Noon-7pm Registration open IRSF and volunteers 5pm- 6:30pm Dinner and Welcome Orientation IRSF Board of Directors Session - 7pm-9pm Meet and Greet IRSF Regional Breakouts Crackerbarrel Breakout Sessions Representative Facilitators Under 3 yrs (Early Intervention) 3-5 yrs (Pre-K to Kinder) Page 1 of 5

2 6-10 yrs (Elementary) yrs (Middle to High School) yrs (Transition Years) 23+ yrs (Adulthood) Siblings Grandparents Professionals Friday June 28 9am-3pm National Ability Center Day Camp (pre-register, pre-pay by June 10 rettsyndrome.org) Shuttles depart starting 8am, Return starting 3:30pm 7am-10am Breakfast at your leisure Attendees and Pre-Paid 8am Rett Syndrome 101 Alan Percy, MD, Director UAB Rett Center at the University of Alabama Civitan International Research Center NAC, Park City, UT Z Chop Haus 9am Opening Welcome Paige Nues, IRSF 9:15am- Keynote Motivational 9:45am Address 9:45a Break Morning Refreshments 10am Research: Overview and Steve Kaminsky, PhD, IRSF IRSF Funded Chief Science Officer 10:30am - noon Harvard, Baylor, UAB, Greenwood Genetics Noon- 1:30pm 1:30pm- 3pm Clinical Trials Panel: IGF-1 (Boston); NNZ (Houston); and Natural History Study update Lunch Neurology: Seizures and Episodes GI and Nutrition Buffet for Attendees and Pre-Paid Daniel Glaze, MD, Medical Director, Blue Bird Circle Rett Center BCM, TCH Molly O Gorman, M.D., Gastroenterologist, Primary Chioldren s Salt Lake City, UT and Suzie Geerts, MS, RD, LD, University of Page 2 of 5

3 Alabama Birmingham Puberty and Adulthood Jane Lane, RN, University of Alabama Rett Center and IRSF Preparing for Mary Jones, MD, Rett Clinic Procedures or Surgeries Medical Director, Oakland 3pm Break Afternoon Refreshments 3:30pm- Genetics Steven Skinner, MD, Center 5pm Director, Greenwood Genetic Center, South 6:30pm- 10pm Understanding the Regression Period Sleep Protected Tomorrows: 8-Step Special Needs Life Planning Dinner and Tribute Reception Carolina Alan Percy, MD, Director UAB Rett Center at the University of Alabama Civitan International Research Center Judy Barrish, BSN, RN, Blue Bird Circle Rett Center, Baylor College of Medicine Mary Anne Ehlert, CFP. Protected Tomorrows Hosted by IRSF June 29 7am-10am Breakfast at your leisure Attendees and Pre-Paid 9am 10:30am Nature Walk for All Abilities, Morning Refreshments and Live Music for those with Rett syndrome and their siblings, extended families, and travel companions Hosted by Fischer Heimburger, brother to Lucy (RTT), with community volunteers and friends for his Eagle Scout project and for the love of his sister 8:30am- 9:30am Morning Keynote: The Enriched Environment 9:30am Break Morning Refreshments 10am- Communication Part 1: 11am Early-On and Light Tech Pati King-deBaun and Judy Z Chop Haus Homestead Resort (no fee, please register your interest with Fisher s mom, Anna, at <AnnaD@MWCIutah.com> Session Page 3 of 5

4 DSM and ICD Changes for Rett syndrome Funding Sources for Assistive Technology and More Eye-Gaze Technology Profile: Prentke-Romich Walter Kaufman, MD, Director Rett Program at Boston and member of Neurodevelopmental Disorders Work Group for the DSM-5 edition Ken Reid, ATP, Funding Specialist, Utah Center for Assistive Technology Chad Bingham, MS, CCC- SLP, Educator Prentke Romich Company, and Lecturer, Utah State University 11:15am 12:15pm 12:15pm- 1:30pm 1:30pm- 2:30pm Communication Part 2: Deeper Conversations Recreational Possibilities and Camp for All Ages, All Abilities Psychological Testing, Educational Alternatives, and Accommodations Lunch Literacy Part 1: Emergent and Supported Reading PT/OT Pati King-deBaun, MS CCC- SLP, Creative Communicating, and Judy National Ability Center, Park City, Utah Sarika Peters, PhD, Psychologist, Vanderbilt University Attendees and Pre-Paid Pati King-deBaun, MS CCC- SLP, Creative Communicating, and Judy Zermatt Carousel Courtyard Page 4 of 5

5 2:30 Concurrent B pm 2:45pm- 3:345p 4pm- 4:40pm 4:45pm- 5:30pm 6pm onwards Dad s Only Facilitated Discussion Eye-Gaze Technology Profile: TobiiATI Tara Rudnicki, President, and Stephan Floyd, Tobii ATI Break Afternoon Refreshments Literacy Part 2: Conventional Literacy Judy Lariviere, M.Ed., OTR/L, Communication Specialist, Rett Clinic, Oakland and Pati King-deBaun, MS CCC-SLP, Creative Communicating Adulthood Options Facilitated Discussion Fundraising: A How- Marcy Fritter, Special Events To Workshop Manager, IRSF Sibling Panel Facilitated Panel Session Closing Summary and IRSF Session Ceremony Free time on our own See Zermatt front desk signups for shuttles to/from Park City; free summer concert at the Homestead; and more Sunday Jun 30 9am-11am Post-Conference Eye- Gaze Make and Take Page Set Workshop ($30) Art Together activity for children with Rett while parents attend the Workshop Judy Lariviere, M.Ed., OTR/L, Communication Specialist, Rett Clinic, Oakland and Pati King-deBaun, MS CCC-SLP, Creative Communicating, and Tobii ATI Volunteers No fee Page 5 of 5