The IEP Advocate Webinar Registration
Thursday October 28, Join us at 12:30pm PST for a presentation with The IEP Advocate Pam Lindemann. She is going to go over the basics… Read More »The IEP Advocate Webinar Registration
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Age Group Meet Ups for RSA 2021
Wednesdays this month we’ll be meeting up at 7:30pm for a while to chit chat with fellow parents and caretakers. Our first group will meet up October 6th. Register in advance so you will be notified and given a link.
First group for parents and caretakers of kids 5 and under.
Second group for parents and caretakers of kids 5 to 14
Third group for parents and caretakers of kids 14 to 18
Fourth group for parents and caretakers of kids 18+
Dr. Mary Jones, my dear friend and colleague.
Dr. Mary Jones, my dear friend and colleague. It is a cold November night when the phone is ringing. I answer. It is Paige Nues… Read More »Dr. Mary Jones, my dear friend and colleague.
Run4Rett 2020
We’re doing the thing! Head over to our events page to join us starting October 1st to put in miles and raise money. See all… Read More »Run4Rett 2020
Take our Conference Survey!
We are switching gears to webinars with plans for our esteemed Siblings Panel to take place in just a couple of weeks! Please take the… Read More »Take our Conference Survey!
Conference Cancellation
From the NWRSA Newsletter:
It is with deep disappointment that we have to announce the cancellation of the 2020 Family Conference and RSO Rett Ed Day. Due to the uncertainty of the times, the NWRSA Board decided that our resources could be utilized more effectively by offering support to families at home and redirecting our efforts to an online solution.
Read More »Conference CancellationFundraising Update
As of January 31st:
Meet the Calvert Family
As the Calvert family, we like to describe ourselves as a disorganized, (yet happy) and chaotic (yet loving) family of 5! My husband, Leigh is in Real Estate and now runs the Portland Strollathon with Rettsyndrome.org each fall. I am lucky enough to stay home with the 3 kids and have recently taken on the role of the State Representative for Rettsyndrome.org. I am also on the fundraising committee with NWRSA. This is our story of Daphne’s diagnosis:
Read More »Meet the Calvert FamilyFull Fundraising Request Letter
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.