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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.
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/
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
 
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
Washington Developmental Disabilities Administration
Idaho Developmental Disabilities Program
Wyoming Developmental Disabilities Section
Montana Developmental Disabilities Program
Oregon Developmental Disabilities Services
Alaska Developmental Disabilities Services
http://dhss.alaska.gov/dsds/Pages/default.aspx
AmazonSmile 
Holiday shopping is coming up! Remind your friends and family members that a portion of every sale can be donated to our local group if they use smile.amazon.com and select Fragile X Association of Washington State.  Or, just click here:  http://smile.amazon.com/ch/91-2018788
 
#GivingTuesday
The first Tuesday after Thanksgiving, this year it will fall on Dec 3. 2019.
 
Combined Fund Drive for WA state employees
The Combined Fund Drive (CFD) is Washington State’s workplace giving program for active and retired public employees. State and higher education employees are invited to give to the charity of their choice through payroll contribution and agency fundraising events. give.wa.gov
Fragile X Clinic * Determination
We continue our search for a physician to lead a clinic where patients across the spectrum of FX disorders may be treated. Please email us if you know medical professionals who understand Fragile X and FX-associated disorders.  We have connected with professionals at U of W and Seattle Children's in hopes of gaining support. We are very committed to once again establishing a FX clinic in the Northwest Region!
 
Volunteers
The Fragile X Association of Washington State is run entirely  by unpaid volunteers who are passionate about our mission. We are always looking for individuals who want to volunteer in our organization! Contact us at washingtonstate@fragilex.org if you are interested in getting involved.

Douglas Broberg

AGE 30

BOTHELL, WA

 Oh, the Places You’ll Go!  I think we have all given this to  someone at some point.  Maybe it was for graduation or just a  cute way to send encouragement.  But, honestly, for some reason  I never thought of this having meaning for my child with  developmental disabilities.  My son, who is affected by Fragile X  syndrome, is 30 years old and has lived with his Dad and I his  whole life until March 2019.  He is now living in his own apartment in downtown Bothell!  We knew at some point Douglas would have to find some type of living situation away from us.  Let’s face it, we aren’t getting any younger!  The dread we all have as parents of a child with special needs.  I have talked with Douglas about where he would like to live when I get too old, and every situation I brought up, his answer was NO!  So how did he end up in his own apartment?!  We have a close family friend who has had several positions in the school system, from Principal to Para Ed.  so he knows kids and special needs.  We have always told him if he would ever move here, we had a job for him working with Douglas.  After years of planting that seed, he decided to take on the experience. It’s been seven months now and, WOW!  The changes I’ve seen in Douglas have been fantastic!  He has become more talkative and proud of himself.  Before the apartment, which he calls the Bachelor Pad,  Douglas would not let me leave him home alone even for half an hour.  He will now stay in the apartment by himself for short periods of time, even going down to the gym on his own!  He has a friend that will come to visit weekly and they will now walk to the store or to 31 Flavors for ice cream on their own.  And they are so proud of themselves when they get back to the “pad”!  Douglas is VERY shy so these steps are huge because it means he is having to order what he wants on his own and talk with people at the store which he would never do before. We were lucky enough to find an apartment that is just a 15 minute walk to where Douglas works.  This has given him another piece of independence.  He now walks to and from work completely on his own.  He works at a retirement home as a dishwasher for the lunch crowd.  He works three days a week, 4 hours a day.  This seems to be the right amount of work, although he could do more.  He was working 4 days a week but started complaining a lot about going to work.  We decided to cut it back to 3, and he has not been complaining so, for now, this seems to be his optimal schedule.  It’s always a balancing act! So, Yes!  Even our special needs kiddos will continue to grow and learn things we (parents) didn’t dream would be in their futures.  Sure, it is different for every child, but I guarantee they will all continue to surprise and amaze us!  Oh, The Places they  will go!!
@FXWashington
@fragilex_association_wa
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washingtonstate@fragilex.org

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Fragile X Association of Washington State · 1001 Cooper Point SW · Suite 140 PMB 276 · Olympia, Wa 98502 · USA

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