Research Announcement

The NWRSF has decided to partially fund a research project under the supervision of Dr. Patrick McLeod at University of Victoria. This exciting new project is assessing a new method of delivering intact MECP-2 into the brain of laboratory animals, with the expectation of moving into clinical application in the near future. Check back soon to see a detailed explanation of the experiment and how it could potentially benefit your child.

Seaside Conference

Last week, the NWRSF sponsored our 2007 conference at the Seaside Convention Center in Seaside, OR. We'll have a full recap posted soon, but here are a few of the highlights:

• The board of directors presented a check for $10,000 to the foundation from the Trager Corporation. The money was raised in a charity auction hosted by football star Terry Bradshaw earlier in the summer. This generous grant will go a long way toward making our conference next year a big success.
• We announced that the 2008 conference will return to Washington State. We will be making a formal announcement about the time and place when we finalize the conference center paperwork.
• An article about the NWRSF conference appeared in the Seaside Signal this week. Here's the link. The part about the splashing is particularly apt, as anyone who attended the aquatic therapy will surely remember.

Check back soon for a full report, including pictures. Thanks to all of the families and presenters who helped make this year's conference a success.

Site Updates

Please excuse the mess - we are in the process of transferring our website to a new server. The good news is that we will be expanding the functions of our site. Some of the new features we are considering include:

• a chat room to keep in touch between conferences
• a Paypal account to update your membership dues and to receive donations
• personal pages to honor your family with photos and tributes
• more frequent news updates
• direct email access to the foundation

If you are interested in these or other features, please leave a comment below.

Reminder: Hotel Registration

The last day to register for special room rates at the Seaside Holiday Inn is July 12th. Call 503-717-8000 to reserve your room today.

Conference Schedule

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