The Northwest Rett Syndrome Foundation is a non-profit organization founded in 1985 by a group of parents and professionals who recognized the need for a strong regional support group in the Northwest. The NWRSF is governed by a Board of Directors consisting of parents and professionals.
Goals of the foundation
- Facilitating early recognition of Rett Syndrome.
- Promoting Rett Syndrome awareness.
- Supporting research efforts in the Northwest.
- Hosting an annual conference for families and professionals.
- Creating parent-to-parent network.
- Providing updated information on current research and therapies through newsletters.
- Providing information on area resources and services.
Northwest Rett Syndrome Foundation Board of Directors
Troy Nelson, President, Washington
Molly Brignall, Vice-President, Washington
Gary Kostenko, Treasurer, Alaska
Julie Peterson, Secretary, Oregon
Dr. Mario Petersen, Medical Advisor, Oregon