Fragile X Association of Washington State

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Upcoming Events and News

Summer Family Picnic 2012

This year's annual summer family picnic is scheduled for Saturday August 25th, at Rhododendron Park in Kenmore, from 10am to 2pm. 

 

Research Studies 

Seattle Children's Hospital to be a part of the ongoing Fragile X Phase IIb trial of an mGluR5 antagonist from Novartis called "AFQ056".   Click here for details.

Check out our Research Projects page for other current FX related studies.

 Seattle Children's Hospital

Seattle Children's is accepting appointments for Fragile X families.  Potential patients should call 206-987-2210 to schedule an appointment through Children's scheduling staff.   They should ask to schedule with Dr. Gwen Glew, in the Neurodevelopmental Clinic or, for adults (over 18), Dr. Lauren Plawner in Neurology.  

The Neurodevelopmental clinic is multidisciplinary and includes teams of nutritionists, physical and occupational therapists, and speech therapists.  The hospital also has audiologists, psychologists, psychiatrists (including Bryan King), and all other medical specialties for referral, including GI (gastrointestinal), Neurology (for seizure management), and Pulmonology/Sleep specialists. All patients seeking an appointment must have a referral from their primary provider.

Seattle Children's is also looking for participants for a study on Treatment for Irritability in Fragile X.  Please see the Research Projects page for more info. 

 

Please read the first edition of our bi-annual Fragile X Newsletter 

 

Elizabeth Griffin is a free-lance writer and speaker who lives in the Seattle area with her husband and two sons.  She is a board member of Fragile X Association of Washington State.

Click here for info on X Stories, which can be purchased on FRAXA or NFXF websites.

 

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