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Dear Friends,

Thank you for being part of our Northwest Rett Syndrome Association community. We are small in number, about 350 individuals representing 160 Rett families, doctors, teachers, therapists and friends; but we are strong in our commitment to supporting each other in every way possible. NWRSA’s geographic range goes from Oregon to Idaho to Washington to British Columbia and all the way up to Alaska. That encompasses a total population of almost 20 million people which includes about 650 RTT individuals. If we were in business, we would say we only have about a 25% market penetration.

Well, we are in a business, after a fashion: we are in the business of connecting, educating and advocating for individuals and families impacted by Rett syndrome. We have a ways to go, both in accessing that other 75% and providing a better standard of support to those we now serve.

To accomplish this we will continue with our current program which includes the annual family conference, providing information and assistance to newly diagnosed Rett families, supplying lunch for those families attending the Rett Clinic at OHSU, maintaining and upgrading our website and sending out a newsletter, on an albeit intermittent basis.

Siblings eating around a table at the 2019 Family Conference

We are now embarking on adding some new programs that we feel will increase our effectiveness. These include a new sibling support program, developed by siblings that recognizes the stress on siblings of RTT individuals and support them in times of crisis. We want to expand our reach by establishing local NWRSA contact people in cities throughout the region so there is always someone there who has walked the walk and can help other families find their way. An annual family conference is a great event, but attendance is limited to those who can afford the time and cost of travel and accommodation. To enhance our connections, we plan to start holding local events across the area: picnics, barbeques, education days, fun ways to meet each other, share our stories, pass on tips and know we are not alone. We will publish and distribute NWRSA information pamphlets to doctors and therapists’ offices.

The funds required to carry out our mission come from a few sources: conference registration fees, fundraising events such as the Run for Rett, donations and grants. The conference cost is subsidized by the other revenue sources. We have some new, active members who are trying out new fundraising ideas such as a tap house dinner and silent auction that raised almost $3,000. We have been fortunate to receive grants such as from the McGraw Family Foundation.

Most of the revenue to support our work is derived from donations and fundraising. Donations come in many forms: a check in memory of an individual, a Paypal deposit by clicking on the website DONATE button, a matching corporate donation, Facebook birthday fundraisers, the Amazon Smile program and conference auctions. To meet our program funding requirements for 2020 our donation and fundraising goal is $20,000.

You can help us reach that target. You can donate by mailing a check to the address at the bottom of the page or go to the website and hit the DONATE button. You can create and host a fundraising event, perhaps a spaghetti supper for NWRSA. You can do a Facebook fundraiser. Go to your Amazon account and connect it to Amazon Smile, identifying NWRSF as the non-profit recipient. Check with your employer and see if they do matching charitable donations, then every dollar you donate is doubled. Get your friends involved.

Donate Now!


There are many ways to support NWRSA and the families we support.

We are excited about being able to do more for more people impacted by Rett syndrome. We know we can make a significant contribution to their success. But the WE includes all of us, not just the board and the committees, but everyone that this letter reaches, and the people they pass it on to.

Thank you for being part of us and helping us carry out our mission statement: “The NWRSA offers connection, education and advocacy for individuals, families and communities impacted by Rett Syndrome.”


Butch Baird, President