22nd Annual Conference of the Northwest Rett Syndrome Foundation
“Expanding the Boundaries”—
Identifying and Using Resources
Sunday, August 12
6:00-9:30 Registration and informal reception
7:00-8:00 Concurrent cracker barrel sessions
Parents and families of preschool children
Parents and families of children 6-12
Parents and families of children 12-18
Parents and families of children 18+
Grandparents of Rett children
Monday, August 13
6:00-8:30 Continental breakfast at the hotel
At the Seaside Convention Center:
8.45-9:00 Welcome and Introduction
Jack Bennett
9:00-9.45 Rett Syndrome: Clinical and Research Update
Dr. Patrick MacLeod
9.45-10:00 Questions and discussion
10:00-10:15 RSRF meeting update
Dr. Sudge Budden
10:15-10:30 Break
10:30-11:00 Update on research at the Oregon Primate Center
Dr. Sergio Ojeda
11:00-11:15 Questions and discussion
11:15-11:35 Eye Tracking: Research and Applications
Dr. Nigel Livingstone, University of Victoria
11:35-11:50 Questions and discussion
12:00-1:00 Lunch provided
1:15-2:30 Scoliosis and Orthotics
Panel: Dr. Ivan Krajbick, Dr. Sudge Budden, Jocelyn Goodall, P.T., and Megan McCarthy, C.O.
2:30-2:55 Hippotherapy
Bobbi Culter, P.T.
2:55-3:15 Aquatic Therapy
Jeanne Baldwin, P.T.
3:15-3:30 Break
3:30-4:30 Demonstration of aquatic therapy in Holiday Inn pool
4:45-6:00 Rett 101: Dr. Budden meets with new families
Dinner on your own
8:00-??? Women’s Night to be Pampered
facilitated by Linda Burr and Kandy Hallstrom
Tuesday, August 14
6:00-8:30 Continental breakfast at the hotel
At the Seaside Convention Center:
9:00-10:15 Managing Transitions: When a Rett Girl Turns 18
Guardianships and Special Needs Trusts: Heather Gilmore, attorney
Parent panel: Gary Kostenko (Alaska), Cindy LeMire (Oregon), Salinda Weimern (Washington), Sharon Nichols (Idaho), Gene Valeriote (British Columbia)
10:15-10:30 Break
10:30-11:00 Traveling with Disabilities
Ron Heagy
11:00-11:45 Nutrition and GI Issues in Rett Syndrome
Claudia Sage, Ph.D., dietician, and Dr. Sudge Budden
12:00-1:30 Lunch provided
ANNUAL BUSINESS MEETING
1:45-2:30 Rett Siblings
Kathy Schnebly, Easter Seals
2:30-3:30 Concurrent cracker barrels:
· Sleep and Seizures
Dr. Sarojini Budden
· Equipment
Jocelyn Goodall, P.T.
· Medication and Naturopathic Alternatives
Matt and Molly Brignall
· Rett Syndrome and the Mature Woman
Dr. Patrick MacLeod and Gene and Mary Valeriote
3:30-6:00 Free time
6:00-9:00 Dinner provided
Keynote speaker: Ron Heagy
Hurumbai and silent auction
Raffle drawing
9:00-11:30 Dads’ Night Out
facilitated by Ron Heagy
Wednesday, August 15
6:00-8:30 Continental breakfast at hotel
At Seaside Convention Center:
9:15-10:00 Practical Suggestions for the Management of Drooling
Cindy LeMire
10:00-11:30 Osteopathic Manipulative Techniques
Dr. Marc Houston, Salem Hospital and OHSU, and Dr. Koulabali
11:30-11:45 Closing remarks
