WHO WE ARE
The Northwest Rett Syndrome Association is an Oregon-based 501(c)3, founded in the early 1980’s by a group of parents and professionals who recognized the need for a strong regional support group. Our member are individuals, families, friends, and professionals impacted by Rett Syndrome across the Pacific Northwest, including Alaska, Idaho, Oregon, Washington and British Columbia.
Our organization, including our board of directors, is all volunteers. Please consider volunteering your time with us!
OUR MISSION STATEMENT
The Northwest Rett Syndrome Association offers connection, education, and advocacy for individuals, families, and communities impacted by Rett Syndrome.
Life with Rett Syndrome can be isolating for all involved. The Association’s activities will facilitate the development of community and connection.
We believe in the absolute need for all people to live with dignity. The Association will work to advance the dignity of individuals with Rett syndrome and others in the Rett community.
The Association is accountable for the responsible stewardship of the resources entrusted to it for the betterment of the lives of individuals with Rett syndrome.
At any given time, people are doing the best they can. We accept that, in ourselves and in others, and always act with a generous spirit.
Humor is a powerful tool in dealing with the challenges faced by Rett individuals and families; it should be a common thread in the work of the Association.
Hope is the characteristic that carries us forward. We are hopeful in the future, as better support services, treatments and tools are developed to enhance the quality of life of Rett individuals, and ultimately for the development of a cure.
BOARD OF DIRECTORS
Butch Baird, OR
Lisa Koblegarde, OR
John Burr, OR
Forrest Miller, AZ
Sharon Sutherland, ID
Denise Studebaker, WA
Megan Brown, OR – Board President
Riley Bousson, WA
Gary Kostenko, AK