Who We Are
Pacific Northwest Angelman Syndrome Foundation was formed in 1994 for the purposes of increasing public awareness of Angelman Syndrome (AS) and serving as a resource and source of support for individuals with AS and their families in the states of Washington, Oregon and Alaska.
The organization is comprised of elected officers and directors, who serve on a strictly volunteer basis, and the membership is open to interested individuals, families and professionals.
PNWASF is associated with the national organization, Angelman Syndrome Foundation (ASF) and has contacts with various other international AS organizations.
WHAT SERVICES DOES PNWASF PROVIDE?
PNWASF publishes a quarterly newsletter for our members. We discuss activities, new information on AS, and "Angel of the Quarter".
We have several board meetings during the year and those individuals who would like to look over the minutes can find those on our website.
Our foundation has produced a couple of brochures that have been useful for handing out at informational booths as well as having available to give to doctors, therapists, teachers, or family and friends.
Every summer, PNWASF tries to organize a picnic in both Washington and Oregon. If there is interest, and a willingness to help organize picnics in other areas, such as Alaska, Eastern Washington or Eastern Oregon, please contact us, as PNWASF would like to help support these functions. Picnics provide an excellent opportunity for all AS family members and friends to get together, exchange information, develop bonds and observe individuals with AS of varying ages.
Every year, PNWASF hosts an adult retreat. The annual PNWASF Business Meeting is conducted during this time, including the election of board members. The adult-only format allows the parents the opportunity to discuss their children with AS at length, while also enjoying a relaxing get-away from every day concerns. The last couple of years, the retreat has been held at a Bed & Breakfast, allowing the families the privacy of individual rooms but a central place to interact and get to know the other families. PNWASF subsidizes the stay at the B&B.
Pacific NW Angelman Syndrome Annual Camp
Every other year, PNWASF is a guest at Camp Prime Time on White Pass, Washington. Camp Prime Time is a non-profit organization which provides the facilities and meals to disability groups. Camp Prime Time has comfortable cabins, electricity, shower and bathing facilities and a lodge and campfire site for group gatherings. The camp area is wheelchair accessible.
The alternating years, camp has been held at Camp Taloali in Stayton Oregon.
Information Booths at Disability Fairs and Conferences
The last several years, PNWASF has maintained a booth at the Infant and Early Childhood Conference held annually in late April to early May. For more information go to http://www.ieccwa.org.
PNWASF has also maintained a booth at the Puyallup School District Special Education Parent Advisory Committee (SEPAC)Resource Fair. For more information, contact the Puyallup School District Administration at 253-841-1301. If you would like more information on how to include an information booth about PNWASF and Angelman Syndrome at your event, please contact us.
Final Note: All of our work is done by parents and other family members who work for free and put out great effort to help the organization and to raise their children, including those with AS. It isn't easy and I am amazed at the volunteers each project receives. Thank you all for your great effort and work through the years.
Pacific Northwest Angelman Syndrome Foundation
12932 SE Kent-Kangley Road, #375
Kent, WA 98031
1-866-330-9256 [This number will change as of 8/10/2013.]