March 15, 2017

About Us

WHO WE ARE

The Northwest Rett Syndrome Foundation is an Oregon-based 501(c)3, founded in 1985 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 MISSION STATEMENT

The Northwest Rett Syndrome Foundation offers connection, education, and advocacy for individuals, families, and communities impacted by Rett Syndrome.

OUR VALUES

BELONGING

Life with Rett Syndrome can be isolating for all involved. The Foundation’s activities will facilitate the development of community and connection.

DIGNITY

We believe in the absolute need for all people to live with dignity. The Foundation will work to advance the dignity of individuals with Rett syndrome and others in the Rett community.

STEWARDSHIP

The Foundation is accountable for the responsible stewardship of the resources entrusted to it for the betterment of the lives of individuals with Rett syndrome.

GRACE

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

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 Foundation.

HOPE

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

Lauren Cramer, WA
Gary Kostenko, AK [Treasurer]
Glenn Lawson, BC [Vice-President]
Staci Nelson, WA
Troy Nelson, WA [President]
Julie Peterson, OR [Secretary]
Sharon Sutherland, ID [Conference Committee chair]
Reid Wilkes, WA [Communications Committee chair]

Medical Advisor:

Dr. Mario Petersen, OR