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About

We are a group started in 2011 by five Moms in Kansas whose lives have been impacted by Fragile X.  Brooke Stack and Lisa Lawrence are currently co-leaders of the group.  Our list of participating families has grown a great deal since we first began, and we welcome anyone interested in joining us.  The Kansas Fragile X Group is a Community Support Network of the National Fragile X Foundation and was formed to provide local support to families in the State of Kansas as well as families on the Western side of Missouri.  Anyone challenged by Fragile X, regardless of where you live, is more than welcome to participate with us as we Grow Stronger Together!

Our mission is to unite families challenged with Fragile X, and to enrich lives through emotional and educational support, promote public & professional awareness, and to advance research towards improved treatments and a cure for Fragile X.  All of these require that we do some fundraising events throughout the year.  We try to make it fun and a family bonding experience.  We also have social outings from time to time, an Annual Walk for the Faces of Fragile X and an annual conference bringing in Internationally renowned Fragile X professionals to help our families and school and medical staff learn how to meet the challenges we all face on this journey.  In addition, we send families to Washington, DC for the annual Fragile X Advocacy Day to be a voice for our children and loved ones.  The Kansas Fragile X Group was recently honored by the National Fragile X Foundation with a Community Support Network award for “demonstrating a complete well rounded approach fulfilling the Community Support Network’s guidelines, reaching each aspect of support, awareness, advocacy and fundraising.”

If you are not familiar with Fragile X, it is the most common inherited cause of mental impairment, and the most common known genetic cause of Autism.  You may learn more at fragilex.org and/or FRAXA.org

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