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14th Annual International Fragile X Conference

June 2, 2014

14th International Fragile X Conference

 

 

It’s almost here!  The event that happens for all of us every two years — a chance to hang out with others on this challenging journey, a chance to learn the latest from the greatest, a chance to get away and remember the breadth of why we do what we do.

The Kansas Fragile X Group is very happy to be one of the sponsors of this awesome event for the second year in a row — we are very fortunate to have strong, compassionate families pitching in to help each other raise awareness, educate within our community and contribute to the strentgh of our global Fragile X family.

Ad for NFXF conference program

To date, we are aware of at least  seven people traveling to California for the conference — Brooke Stack (Olathe, KS), Angie Grantman (Overland Park, KS), Laura Herrold (Vassar, KS), Christina and Jason Murphy (Holton, KS), and  Theresa Lemire and Melissa Joslin-Lemire (Manhattan, KS).  If anyone else is planning to go, please let us know by emailing  to kansasfx@gmail.com.  We don’t what you to be left out of getting a t-shirt we will all be wearing at the opening event!

In addition to being a sponsor, we are contributing a gift basket representative of Kansas, as well as many Fragile X related handmade items to the auction to raise funds for the National Fragile X Foundation.   We are happy to do our part for the greater good.

Growing Stronger Together, one day, one event, one kind gesture at a time.

3rd Annual New Directions in Fragile X Conference – February 22, 2014

January 16, 2014

URGENT!  Please note that the location of our conference this morning at KU Edwards Campus has changed!  We will be in Room 110 of the Regents Center.  Please enter and park on the East side of the campus (Quivira and 126th).

Please join us for the 3rd Annual New Directions in Fragile X Conference, February 22. 2014 at the University of Kansas, Edwards Campus, 127th and Quivira (entrance to Ragnier Hall is off of 127th; link to map http://edwardscampus.ku.edu/campus-map), Overland Park, KS.

Fragile X Across the Life Span:

Behavioral and Educational Strategies,

Peer Relations and Adult Options

Featured Speakers:

Dr. Marcia L. Braden, Ph.D., P.C.

Dr. Braden is a licensed psychologist with a clinical practice in Colorado Springs specializing in children and adolescents. She is a former teacher with experience teaching general and special education. She has written and published numerous articles related to education and behavior management strategies, techniques, and interventions. She is a contributing author to the book Fragile X Syndrome; Diagnosis, Treatment, and Research, compiled and edited by Drs. Randi and Paul Hagerman (Mind Institute) and Children with Fragile X Syndrome: A Parent’s Guide, edited by Jayne Dixon Weber.  She is the author of Fragile – Handle With Care: More About Fragile X Syndrome.

Dr. Braden is a member of the Scientific and Clinical Advisory Board to the National Fragile X Foundation and is a member of the Advisory Committee for the HillSprings Learning Center.

Dr. Braden frequently consults with parents, therapists, educators, and medical staff about effective treatments. Respected for her work internationally, she has presented at numerous conferences and workshops about Fragile X syndrome, autism, and other related disorders.  http://marciabraden.com/

Holly Usrey-Roos

Ms. Usrey-Roos has worked for the National Fragile X Foundation since 2010 and became the LINKS program coordinator in the fall of 2012.  She has been instrumental in the development and ongoing activities of 43 localized affiliates of the NFXF, including the Kansas Fragile X LINKS Group.  She has also played a role in coordinating support for families affected by Fragile X nationally and internationally.  Holly has two children, a son and a daughter, both with Fragile X Syndrome.  In 2006 she founded The Central Illinois Fragile X Resource Group to bring families together and raise awareness in the region.  She currently acts as co-leader of the group.  Holly has been a popular speaker at several conferences, including the NFXF’s international conferences, on topics such as “Working with Your School,” “Media Relations,” “Fundraising,” and “How to Talk to Your Child’s Classmates About Fragile X.” The last of these was made into a podcast for the NFXF.

Donna Beauchamp

Kansas Fragile X LINKS Group Co-Leader, Case Manager, Mother of two w/ FXS, Overland Park, KS

Donna Beauchamp is the mother of three adults. Both of her sons, ages 26 and 31, are fully affected by Fragile X Syndrome. Her daughter is a carrier of the Fragile X gene.

Using life experience and knowledge gained from having children with FX, Donna has worked as an educational advocate, community educator, family support coordinator, and research program assistant. She is currently a targeted case manager serving people with all developmental disabilities across the life span.

Agenda

7:30—8:00     Registration and breakfast

8:00—8:15      Introduction

8:15—10:15     Behavioral Issues and Remedies, Dr. Braden

10:15 – 10:30  Break

10:30—12:30 Learning Style and Educational Strategies for Reading, Math and Writing, Dr. Braden

12:30 – 1:30   Lunch

1:30—2:30    Breakout Sessions

Families stay in auditorium:  Talking to Students about Fragile X Syndrome, Ms. Usrey-Roos

Educators stay in lunchroom:  “Hands on for Educators” Session for Educators, OT/SLP, Paras and more, Dr. Braden

2:30—3:30    How did they grow up so fast? What you need to know and what your child’s options are as an adult, Mrs. Beauchamp

3:30—4:30    Questions and Networking  (families much be present for the opportunity to win speaker-related gifts)

Who should attend?

Families, educators, occupational therapists, speech and language pathologists, and other providers who care for and work with children and adults with Fragile X Syndrome and Autism Spectrum Disorder and really any disabilities which require help with behaviors and educational strategies.

How much does it cost?

$35 per person which includes continental breakfast, lunch and materials. Certificates of attendance will be provided by the University of Kansas for each attendee.

How to Register?

Please go to  http://kansasfx2014-conference.eventbrite.com to register. Pre-registration is encouraged by February 10th. While we will welcome walk-in registrations on the day of the event, we encourage advance registration to make sure you have a name badge printed and a certificate of attendance, in addition to our having an accurate head count for the food order.  If you want to register in advance but pay on the day of the event, you may do so by selecting “Other Payment Options” and then to pay by check.  We will be able to accept checks and/or credit card payments at the conference.  Scholarships will be available to families affected by Fragile X.  Please email us at Kansasfx@gmail.com if you are interested.

Looking for a Hotel?

Hilton Garden Inn Olathe at 12080 S. Strang Line Road has a block of rooms set aside for February 21st and 22nd. To receive the discounted price of $109.00 plus fees per night, you must call 913-815-2345 and mention the Kansas Fragile X LINKS Group by February 15th. http://hiltongardeninn3.hilton.com/en/hotels/kansas/hilton-garden-inn-olathe-MCIOLGI/index.html

Spread the word?

Please forward this flyer (PDF format) to anyone you think might be interested in attending: New Directions Conference 2014 Updated or have them go to Kansasfx.org for this posting.

Questions?

Please let us know if you have any questions!  You may email us at Kansasfx@gmail.com or call the numbers indicated on the flyer link above.

Mini Conference for Special Needs Parents

November 8, 2013

We wanted to share an opportunity for our families to attend a mini conference on Tuesday, November 12 from 6:00 to 8:00 p.m. Please click on this link for the details and to register on-line if you are interested in attending any of the sessions offered. While this is hosted by the Blue Valley School District Special Education Advisory Group, the subject matters being discussed are applicable to our families no matter what school district they are in.

Blue Valley Invitation to Mini Conference

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

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