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3rd Annual Walk For the Faces of Fragile X

October 12, 2013

3rd Annual Walk For the Faces of Fragile X19 Group sign with balloons

Organized and Hosted by 

Kansas Fragile X LINKS Group

  “The walk just keeps getting bigger and better every year!” This was a comment made by the Mom in one of our families who drives more than 3 hours to attend the walk. She was particularly excited this year because her brother and his family joined them at the walk. That’s what it’s all about — families and their communities coming together to raise awareness, foster acceptance, and see that we are not alone on this sometimes daunting journey. The walk helps us grow stronger together, and it helps us raise the funds needed to support our efforts throughout the year – one of which is to bring internationally respected professionals to Kansas to help us educate our families, their school staff, service providers and medical professionals about the most effective and latest approaches to helping with the challenges of Fragile X. For example, last year’s walk funded a conference that had seven school districts from all across Kansas in attendance, and we have heard from some families that it made a huge difference in how the school approached teaching their child.

21 Fragile X momsWe had a Mom travel all the way from Chicago to be at our walk this year. Jeanie Calenoff’s take on the day she spent with us was “Brilliant!” She said that the day flowed really well, she was impressed with the high quality theme baskets and handmade items for the auction, live entertainment, incredibly tasty home baked goods for sale, free lunch, beautiful park setting, game area, playground for the kids, and the scavenger hunt for the kids to do during the walk. There was a professional face painter and a balloon artist, and both were utilized and fun for the kids AND some adults. It was clearly a fun day for everyone.

16 another tutu picOne of the most touching moments was the reading of a letter from Jayne Dixon Weber that 9 pink tutus Mom and Jenaccompanied the two pink tutus she made and donated for our silent auction. The most poignant quote was that her goal “is to encourage families to not just live with Fragile X, but to embrace it. Our children teach us more about life and how to live it than anyone or anything could ever do.”

We started with four families three years ago, and this year we had 14 family teams raising funds and participating in the walk – some with young children and some having adult children with Fragile X Syndrome. With around 200 people registered, plus others who attended to watch the entertainment or participate in the auction, it was a huge and vibrant Walk for the Faces of Fragile X.

Thank you to everyone who came out and supported our families!  Also, a big thank you to our sponsors and volunteers, and those who donated to the auction and the bake sale.  This truly is a team effort, and we appreciate all of you!  See you next year!

Balloon Artist

Balloon Artist

6 Youngest Murphy with balloon hat3 Balloon ArtistJay in balloon hat

Face Painter

Face Painter

14 Anthony and Suzi12 more face painting7 kids with faces painted

Silent Auction

Tutus in auction Silent Auction

Bake Sale

Bake Sale

Kansas State University Tap Dance Ensemble

Kansas State University Tap Dance Ensemble

15 Ryan tapping4 Tappers tapping with CharlieTappers

Walkers Volunteer (Logan's girlfriend) Two young men T-Shirt sale table Terri Fox Fitness sponsor sign Team Tyson and Charlie (Tyson playing baseball) Team Tyson and Charlie (Charlie with Willy) Team Joshman sign Team Chaliver sign Smile Therapy folks Signs shelter with people Rhen and Rhett's Runners (football) sign Ryan behind tree Scavenger Hunt sheet Preregistration Rally for Ryan Sign Rhein & Rhett's Runners (cheerleaders) Peters Parners sign Murphy25 Murphy24 Murphy23 Murphy21 Murphy14 Murphy11 Murphy13 Murphy8 Murphy5 Murphy1 Mike, Mary and Lisa KU and KSU contest table KSU closeup Kids games Jen and Josh Jen and Kelliana Info table Hanna's Heros sign Hanna's Auto Repair Hanna family sign with carrier passing FXS genetic cause of Autism sign fragile x info sign Food prep Eric & David Team Toews sign Brooke and Kristen Anthony's Advocates sign Auction set up Balloon experts! Adam's Army sign Anthony and his scooter Angie and Jen posting Tap Ensemble 17 Murphy's Mentors sign Toews3 Toews2 Toews1 DSC04365

This link should take you to our bigger photo album from the walk which was uploaded to facebook.  You do not have to use facebook to see the pictures:

https://www.facebook.com/media/set/?set=a.595379827171933.1073741829.176750102368243&type=1&l=7bb262895b

Rhein & Rhett’s Runners — Holton, Kansas

September 16, 2013

Holton Satellite Walk 12

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.

Holton Walk 10

Holton Walk 9

Holton Walk 8

Holton Walk 7

Holton Walk 2

Holton Walk 3

Holton Walk 5

Holton Walk 4

Holton Walk 11

Holton Walk 6

3rd Annual Walk for the Faces of Fragile X!

August 20, 2013

Thank you to our sponsors, families and friends!

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

Walk 2012

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

Fragile X walk
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

Group “Get Together” on Saturday, August 24

August 15, 2013

banner_sm.jpg

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

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!
image

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 sew2dazzle@gmail.com 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.

Mrs. Rogers, her gang, and ROCKET are coming to our neighborhood!

August 8, 2013

Rogers Neighborhood

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!

Transitions for Children and Adults with Fragile X

June 25, 2013

Flower for bullets
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

Hotel Information from Kim at FXRCM:
This hotel is close to the St. Louis Arc :). It is right off of 270 & Olive Blvd.  You can take Olive Blvd. all the way to Warson Rd. which is where the Arc is.  I am not good with miles, but I would guess it is less than 10 minutes from the St. Louis Arc.  This is a very safe a friendly area:)
I hope this helps!  There are also a few hotels in the West Port area…however I know those prices will be quite a bit higher due to there location.  The Creve Couer area (which is where the Drury Inn is located is fairly reasonable.
drurysuitescrevecoeur.hotelsone.com/
I just signed up for their emails which offer discounts.  You might try this too.
Thanks & please let me know if I can help any further.
Kim 

Kansas FX Dads’ Night Out on August 24th

June 14, 2013

Sorry ladies; boys only for this one.  Jay Stack and Mike Hanna are planning a night out for the guys!  If you are a father, grandfather, brother or uncle (in a family dealing with Fragile X)  who is interested in attending a Royals game with other guys on a similar journey, please contact Jay Stack, stack.james518@gmail.com, by June 21st to receive further information.

Kansas FX Dad’s Night Out

at Kaufman Stadium

Washington Nationals

Vs.

Kansas City Royals

Saturday

August 24th, 2013

6:10 p.m.

Upcoming Family Gathering on July 6!

June 13, 2013

Click this link to see more details:

http://us2.campaign-archive2.com/?u=b1bb311ee253556d1053ea95f&id=f55bc562a6&e=9237afc664

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