The Murphy family lives in Holton, Kansas and recently became active in the Kansas Fragile X LINKS Group. On Sunday, their community came together and did something that turned out to be an incredible blessing. At the suggestion of a football player at their son’s school, “Rhein & Rhett’s Runners, Team Holton, Kansas” was formed and a satellite walk to our 3rd Annual Walk for the Faces of Fragile X was held at the school track. Why a satellite walk, you might ask? Because the seniors are scheduled to take the ACT exams on September 21 (the day of our walk), but they wanted to show support. And that they did!

A large turnout came to walk a mile on behalf of Rhein and Rhett. The event was started with many tears in the crowd as a friend spoke about how these boys had affected her son and others within the community. Our informational signs were placed around the track to raise awareness, as well as signs prepared for the football team and the cheerleaders and for Murphy’s Mentors (the family’s team name for our walk next Saturday). Many of them purchased our walk shirts – over $500 was collected for shirts; and many folks gave donations to support families in Kansas who are affected by Fragile X – just under $500 was donated. From all of us to all of Holton, thank you for your kindness and generosity, and for the awesome sense of community and support provided to this amazing family.

Thank you to our sponsors, families and friends!

We are indeed Growing Stronger Together! 
Preview the back of this year’s shirt!

September 21, 2013

Shawnee Mission Park, Shelter #2
7900 Renner Road
Shawnee, KS
Register NOW

Schedule :

9:00 am Registration begins
10:00 am Walk begins
11:00 am Lunch begins
11:30 am Silent Auction concludes
12:00 pm Event concludes

Activities include (subject to change) :

• Live Music
• K-State Tappers
• a Silent Auction
• a Magician
• Scavenger Hunt for kids
• face painting
• and more!

Register (“JOIN”) to Walk or give a Donation on-line by going to http://www.crowdrise.com/kansasfxwalk2013

Please join us for our

3rd Annual Walk for the Faces of Fragile X!

Register by Mail

If you would rather , you may print this 2-sided, tri-fold flyer and mail it with a check to the address indicated on the form.  Please also print the flyers to distribute to friends and family. Walk Registration Flyer 2013 Final tri-fold

Each family challenged by Fragile X that creates a Fundraising Page and/or Walk Team
on-line by September 1st will have their team name on the back of the shirt! YOU ARE NOT REQUIRED TO RAISE FUNDS! We would still like your family team name to appear on the website and on the shirt, so please set one up!

Registration fee includes

Registration fee includes a t-shirt and lunch and an awesome fun-filled family day at the park! Please register for the event by September 6th to guarantee a t-shirt at the walk.

• Adult (11 yrs and up) – $25
• Youth (5 to 10 yrs) or Individuals with FXS (no matter what age!) – $10
• Youth (4 and under) – FREE

Donations

If anyone would like to donate a basket or item or gift card for the silent auction, please contact us at kansasfx@gmail.com – this is a very fun part of our event!  Bring your checkbook and/or cash to do some shopping!

If you would like to donate items towards our baked goods sale (our first time doing this!) – we will be having cookies, breads, pies, cakes and more for sale – please let us know by September 6th (kansasfx@gmail.com).

We look forward to seeing you and your family on September 21st.

The Kansas Fragile X LINKS Group

“

Please join us at our next get together in just nine days! We’ve invited a speaker whom we know will have an impact on how we all view the future for our children and adults with Fragile X Syndrome.  Let us know you’re coming so we have enough chairs!

Date:       Saturday, August 24, 2013

Time:       9:00 am – 10:45 am

Walk Planning Meeting (everyone is welcome to either sit in or get involved)

11:00 am until 12:00 pm

Featured Speaker: Anne Hull, Board Member, Past President and Founder Heartstrings Community Foundation

Place:       University of Kansas, Edwards Campus

Corner of Quivira and 127th Street (entrance faces 127th), Overland Park, Kansas 66213

RSVP:        kansasfx@gmail.com or Donna Beauchamp @ 913-406-2424

Anne Hull is the mother of two adult sons with Fragile X Syndrome. She will share her experiences and the changes that come as our children get older. We’ll hear how she came to form Heartstrings Community Foundation to help her boys and others. We’ll also hear what she sees in the future for services for people with Fragile X.  Anne and her family reside in Leawood, Kansas.

“Heartstrings Community Foundation assists adults with developmental disabilities to live meaningful, independent, productive lives through interactions within the community.”

http://www.heartstringscf.org/

The Kansas Fragile X LINKS Group is affiliated with the National Fragile X Foundation.  Our co-leaders are Brooke Stack & Donna Beauchamp.

kansasfx.org

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!

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!

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!

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 sew2dazzle@gmail.com and please put the word “HANDOUTS” in the subject line.

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.

Save the date!   September 14, 2013!

Cindi Rogers and her family — Chris, Jake and Joe, oh and LuLu too! — are coming to Kansas in Rocket (their RV)! They’ll only be here for one night and they are inviting our Kansas FX families to come by and visit. Mark your calendars. We will share details when we know for sure, but one thing is certain, they will be staying at Hillsdale Lake State Park (off of I-35 in Paola, Kansas). It’s the week before our walk, so we hope to see you two weekends in a row!

Ready for a road trip to St. Louis? Our neighbor, the Fragile X Resource Center of Missouri, is hosting another one of their awesome conferences/seminars. Before our Kansas group started, they were our only source for regional educational opportunities. We still love to support their efforts, get away for a day, and learn valuable information.

Many of you came to our conference at KU Edwards Campus, which featured Mouse, Tracey and Cindi Rogers.  They are the speakers for this one, and it’s FREE!  The only cost is $10 for lunch.   If interested, please register at this First Giving link and let us know you’re going. Maybe we can form a carpool!

http://www.firstgiving.com/FXMO/transitions