NW Region FX Conference Success
In May 2019, we had the opportunity to host a live webinar with Fragile X behavior and education expert, Dr. Karen Riley. We welcomed a new family and were happy to see many teachers in attendance for this event. Our sincerest thanks to Prime Electric for hosting our event.
Educational Opportunity to Present at WWAMI
On September 25, 2019, Wendy Geiger and Kaitlyn Handley had the opportunity to address over 60 students at the WWAMI Medical Education Program which is a partnership with the University of Idaho and University of Washington School of Medicine and the states of Washington, Wyoming, Alaska, Montana and Idaho. The students were very engaged and interested to learn about FX and the professors expressed interest in making this an annual event.
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Upcoming Special Needs Parent Legal Planning Workshop
November 9, 2019, 1:00-3:00pm. FXAWS is hosting a legal workshop for parents of special needs children who would like to find out more information about the process of guardianship, special needs trusts, estate planning and more. Attorney Char Quade, CK Quade Law PLLC, will be presenting and answering all your questions! Join us live at the Lewiston City Library or join us remotely from your own computer as we stream the event. Contact washingtonstate@fragilex.org if you are interested in signing up for this event.
Upcoming Lewis Co. Autism Conference
November 6, 2019. FXAWS will be at the Lewis County Autism Conference for the third year in a row with a Fragile X booth to share information. Please let us know of any other resource fairs in your areas so we don't miss an opportunity to share about FX.
https://www.lcautism.org/autism-conference/
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NFXF Advocacy Day 2019 Success
What an experience. Walking into that conference room and seeing so many gathered from so many different states for the common purpose of advocating for Fragile X was inspiring. As an advocacy day rookie, I was filled with nerves, completely unsure what to expect coming into this experience but filled with determination and passion to make a difference. As the training went on, I started to feel the real importance of what we were doing and why we were there. It was an awesome and overwhelming feeling as I realized that we had a very direct impact on funding for research, and the ability to get policies passed that could make a tremendous difference in the lives of those affected by Fragile X. I was no longer one individual in a crowd of many, but rather an important team member with a specific and very personal mission. As we congregated at the Capitol on Tuesday, February 26, 2019, I felt empowered and ready to speak to my representatives and share our story. It was chaotic and systematic all at the same time as we rushed from office to office, making our way through underground passages to make it to our next meeting and back. We educated many about FX, shared our stories, asked for funding, explained the need for services, and although it was a whirlwind, our senators and representatives from congress were grateful for our efforts in traveling all the way to DC to see them in person and bring these issues to their attention. I am so grateful for this experience, I truly felt that we made a difference and that our efforts individually and as a group were impactful and powerful. -Kaitlyn H.

February 2019
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Local Advocacy
WA State Fragile X is with Rare Disease Legislative Advocates to sit down with Christine Nahn, South Sound Director for Senator Patty Murray.
Our asks: Support S. 427: Autism CARES Act.
* Authorize programs -awareness, training and research - for developmental disabilities, including autism. They cover all developmental disabilities. Training programs fund distance and in-person training for professionals who treat developmental disabilities, fellowships for developmental pediatricians, and autism-related research.
* Reauthorizes programs for 5 years.
Update: Sept. 30, 2019 Autism CARES Act signed into law.
Senator Murray sits on the Defense Appropriations Subcommittee, so she has been asked to please make sure Fragile X is included as an authorized research area for the DOD’s Peer Reviewed Medical Research Program.
We also asked Sen. Murray to join the Rare Disease Congressional Caucus as well as Co-Sponsor S. 2158: Reauthorization of the Newborn Screening Saves Lives Act. It was a great meeting.
Update: Sept. 12, 2019 Fragile X has been restored as an authorized research area at the DOD
Shout out to Dan Whiting (NFXF Director, Community Impact) for his help in coordinating advocacy efforts and supplying educational materials to help support our asks.
-Michelle O.
August 2019
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