Skip to content

6th Annual Fragile X Walk

September 12, 2016

6th Annual WalkPlease join us for our

6th Annual Walk for the Faces of Fragile X! 

September 17, 2016

Shawnee Mission Park

Shelter No. 2

7900 Renner Road

Shawnee, KS 

 

Schedule:

9:00 am – Registration begins

10:00 am – Walk begins

11:00 am – Lunch begins

11:30 am – Silent Auction concludes 

 

Activities include (subject to change):

Live music, K-State Tappers, a silent auction,

Scavenger hunt for kids, face painting, kids games and more

 

Register

Register to Walk or Give a Donation on-line by going to https://www.crowdrise.com/6thKansasFXWalk2016

NO COOKING MONDAY DINNER!

May 21, 2016

The Kansas Fragile X Group will be having a fundraising night at Culver’s of Olathe at 18685 W 151st Street – Olathe, KS (one half mile east of 1-35 and the Great Plains Mall)

DATE: Monday, May 23, 2016

TIME: 4PM-9PM

Culver’s of Olathe will donate 25% of the sales we generate (less tax) that night to our group. All we have to do is pass this flyer out to all of our family, friends, and neighbors and show up for good times and great food.

THE FLYER BELOW MUST BE PRINTED AND  ACCOMPANY ALL ORDERS. This flyer is valid on dine-in, carry- out, and all drive- thru orders. If you are short on-time, call your order in at
913-764-1111, and we will have it ready for you when you arrive.

This flyer is valid only at CULVER’S OF OLATHE at the date and time specified
above.

If you know someone in the Olathe, KS area, please pass it on!

Flavor of the Day: Toffee Pecan

FUNDRAISER FLYER2016

Brooke Stack
Lisa Lawrence

Kansas Fragile X Group
PO Box 401 | Olathe, KS 66051-0401
P: 913-244-1784 | 913-499-5579

NortheastKS@fragilex.org

Save the Dates!

May 15, 2016

Save the Dates for Two Important Events!

 September 17, 2016

6th Annual Walk for the Faces of Fragile X

Shawnee, KS

 

November 5, 2016

5th Annual New Directions in Fragile X Conference

Overland Park, KS

Speaker:

Dr. Karen Riley PH.D.

http://morgridge.du.edu/staff-members/riley-karen-s-phd/

 

More information to come in the near future!

 
 
 
 
Brooke Stack
Lisa Lawrence
Kansas Fragile X Group
PO Box 401 | Olathe, KS  66051-0401
P: 913-244-1784 | 913-499-5579

 

Inline image 1

Family Fun Day on February 6, 2016

January 18, 2016

Join us!  We would love to see you (and your children!) at our Family Fun Day!  To maximize your wiggle time, try to arrive at 3:00 (or a little before) and plan to be there until 4:00.  We have the gym reserved for 45 minutes and then a room for snacks and possibly an activity for the last 15 minutes.  See you there!

Flyer for Gym Meet & Greet

Registration for the 5th Annual Walk for the Faces of Fragile X is now open!

September 19, 2015

Please join us for our 5th Annual Walk for the Faces of Fragile X!

October 17, 2015

Shawnee Mission Park
Shelter No. 2
7900 Renner Road
Shawnee, KS

Schedule:

9:00 am – Registration begins

10:00 am – Walk begins

11:00 am – Lunch begins

11:30 am – Silent Auction concludes

Activities include (subject to change):

Live music, K-State Tappers, a silent auction,  scavenger hunt for kids, face painting, kids games and more!

Register, Donate and/or Create a Team:

You can create your own Fundraising Page and/or Walk Team, Register to Walk or Give a Donation on-line by going to

www.crowdrise.com/5thKansasWalk2015

If you would like to register to walk on-line but mail a check in, please use the Coupon Code FRAGILEX and mail your payment to:

Kansas Fragile X Group
PO Box 401
Olathe, KS 66051-0401.

If you would like to register off-line or just mail in a donation, please print and fill out this registration flyer attached and mail it in with your payment!

Walk registration flyer 2015

Each family that creates a Fundraising Page and/or Walk Team on-line by September 30th will have their team name on the back of the shirt!  There is NO wiggle room in this deadline.

Registration fee includes a t-shirt and lunch as well as all of the fun activities. Please register for the event by September 30th to guarantee a t-shirt at the walk.

· Adult (11 yrs and up) – $25

· Youth (5 to 10 yrs) or
Youth and adults with Fragile X or
any other Special Needs – $10

· Youth (4 and under) – FREE

Want to become a sponsor or know someone who would like to??

Check out the donation request letter that is attached to see the sponsorship levels. You could earn a FREE registration! Must receive by September 30th to receive proper recognition.

Walk donation letter 2015 – new sponsor

Other ways to help the group:

Think about donating an item towards the silent auction?  Let us know by September 30th that you will be making a donation so you can receive proper recognition!  We will need to know the value, who is donating it, their email address and a mailing address for a tax receipt and thank you!

You can donate items towards our baked goods sale!  This will be our 3rd year having a baked goods sale.  Please consider donating some home baked goodies!

Don’t forget to ask for pledge donations!

Ask your neighbors, co-workers, friends and family to sponsor you!  This is an easy way to cover your registration cost or to just raise funds towards your Team! Here’s a sponsorship form to fill out and collect to turn in to us.

Walk pledge form 2015

Funds raised from our walk go towards our local conferences, attending Advocacy Day in DC, scholarship funds towards International Fragile X conferences, the National Fragile X Foundation & more!

If you have any questions, please let us know! We look forward to seeing you and your family on October 17th.   Remember, we are Growing Stronger Together!

Co-Leaders:
Brooke Stack & Lisa Lawrence

Kansas Fragile X Group
PO Box 401 | Olathe, KS 66051-0401
P: 913-244-1784 | 913-499-5579

NortheastKS@fragilex.org or Kansasfx@gmail.com

Save the date for the 5th Annual Walk for the faces of Fragile X!

September 1, 2015

We hope you’ll join us at Shawnee Mission Park, Shelter No. 2, on Saturday, October 17th from 9:00 am until Noon!  It’s sure to be a fun family day at the park! We’ll have games and activities for your children, a one-mile walk with facts and faces along the way, entertainment, lunch, and our historically awesome auction and prizes! Registration will open soon. Meantime, put it on your calendar and tell all of your friends — you won’t want to miss it!

image

4th Annual Walk for the Faces of Fragile X

September 4, 2014

FX Walk flyer 2014 with transparent logo

 

 

We hope you’ll join us for a super fun day at the park!  It is an awesome way to connect with other families challenged by Fragile X, a great way to show your support for a family you know, and to learn more about Fragile X related disorders as you walk a mile in a beautiful park setting and read informational signs along the path.  You’ll also get to see some of our Kansas Faces of Fragile X displayed on signs along the way.  There are two ways to register and choose your t-shirt size or choose not to get a t-shirt, but either way must be done by September 26 to guarantee a t-shirt at the walk:

1.  Online at www.crowdrise.com/4thKansasWalk2014  (be sure to choose the team you wish to support!).  On this site you may pay by credit card or in the coupon blank type the word “Mail” and the site will not require a credit card payment.  If you do that option, you may mail a check made payable to the Kansas Fragile X Group, P.O. Box 401, Olathe, KS  66051-0401,  or you may pay the day of the walk.

2.  If you prefer not to use the online option, you may print the Walk registration Flyer below.  Fill out the form and mail it with your payment to the above-mentioned address.

Walk registration Flyer tri-fold 2014

The Kansas Fragile X Group and its Teams/Fundraisers welcome donations to support our efforts at the website mentioned above.  Hope to see you on October 11!

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

%d bloggers like this: