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Our Group Has Had A Busy Summer!

August 11, 2013

Autism conference:

Wow! We have had a very busy summer! Our co-leaders, Brooke Stack and Donna Beauchamp, travelled to Dodge, Kansas (a six hour drive!) to raise awareness about Fragile X at an Autism conference. There were over two hundred people in attendance AND they met Dr. Temple Grandin!

Summer Family Get Together:

Each summer, we try to travel away from Johnson County where most of our active members live and visit where other families live.  Last year we went to the zoo down in Wichita, Kansas co-hosted by the Bloomer Family and we met a new family with two adult sons who are fully affected by FXS.   This year we had a super fun family gathering co-hosted by the Hanna family at Lake Pamona! Wow, what a great day we had.  The kids were blessed with boat rides volunteered by some of the Hanna’s friends, and boy did they have a blast.  Jay and Brooke gilled us some awesome burgers and dogs, each family brought a side dish (or two), and we had an awesome Kansas-style pot-luck.  There was swimming, fishing, game playing, and thanks to Lucas, a very special rock adoption.  We also had the pleasure of having another family join us who were dealing with a different disability than us, but they fit right in and we enjoyed having them.  Thank you Mike, Laura, Alicia and Lucas for such fun day for all of the FX families who were able to be there!

Pamona1 Pamona7 Pamona8 Pamona9 Pamona10 Pamona12 Pamona22 Pamona35 Pamona53

National Fragile X Awareness Day:

We were all spread out in different places for National Fragile X Awareness Day on July 22, but many of us were posting facts and pictures on social media and one of our families was actively fundraising for the National Fragile X Foundation.  The Murphy family, who live North of Topeka in a small rural town, were able to come in third out of 43 teams nationwide for the amount they raised!  So proud of you!  And guess who got the trophy for being the top money raiser on the team…….Dad did!  Congratulations, and thank you for all of your efforts on behalf of the NFXF.  Meantime,  a few of our families posted pictures in the shirts designed for the NFXF to sell for a Virtual Walk to “Let’em Know”.  Our families also had many supporters who wore green on their behalf!  We thank you for being so supportive!

Fragile X awareness 2 Fragile X awareness 3 Fragile X awareness 4 Fragile X awareness 5 Fragile X awareness 6

Parade in Holton, Kansas:

Next up was the County parade in Holton, Kansas!  The Murphy family invited others to join them on the float Christina created to raise awareness in their community.  The Lawrence family and the Beckner family were able to make the trip.  We hear that a fun time was had by all!  Thank you for such an awesome opportunity!

Holton Parade Holton Parade2 Holton Parade3 Holton Parade4 Holton Parade5 Holton Parade6 Holton Parade7

Transitions Conference in St. Louis:

And last, but certainly not least, several of our members made a trip to St. Louis for the Transition Conference hosted by the Fragile X Resource Center of Missouri. We were honored to be invited to their speaker dinner the evening before the conference and had the opportunity to expand our Fragile X Family!   It was an amazing conference with lots of valuable information and great examples of some strategies to try.  Included during the presentations was information about transitions, from small transitions (i.e. into a new building) to big ones (i.e. elementary school to middle school), as well as information and strategies for both young children and adults. The speakers were none other than Mouse, Tracey and Cindi Rogers! – The same speakers that we had at our conference in the Spring! We were excited to see Mouse and Tracey using one of the gifts we gave them when they came to Kansas.   If you would like a copy of the handouts, please email Angie at and please put the word “HANDOUTS” in the subject line.

Cindi Rogers in St Louis Mouse and Tracey with bags.

Back to School:

Speaking of transitions, this is the week that most of our children and young adults return to school in Kansas.  We wish you all well with that transition, and we hope to see you soon!  Don’t forget that Cindi Rogers and her family will be at Hillsdale Lake with “Rocket” on September 14 and have invited us to come visit with them.  We hear there could be lots of meat from a “DDD” in Paola, Kansas involved as well as an opportunity for us to take our favorite side dishes.  More info will be provided when we get closer to their visit.  We also count on seeing you all on September 21 at Shawnee Mission Park, Shelter No. 2 for the 3rd Annual Walk for the Faces of Fragile X!  More information about the walk will come to you via email later today.  If you want to make sure you are on the group’s email list, please use the contract form on this site and send us a message.  If you would like to follow our posts on this site, please click on the small “Follow” icon at the bottom of the page.

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