Fragile X Community of Kansas City

10/15/2015

Life with kids is busy. Life with special kids/adults is busy. Is one parent busier than the other? I think it all depends on your parental outlook. If you are looking at this page, you may be the kind of parent we are: very involved making certain YOUR child/children (each) have all they need to live the best, happiest and most productive life they can. We had four amazing adult children: two girls and two boys, in that order, all three of the younger ones were affected to different degrees from FX (Autism, ADHD, learning disability, etc.) However, our older son passed away with cancer in 2022. We also have four wonderful grandchildren, three boys and one girl. All three boys are affected to VERY different degrees and our granddaughter (praise God) is not even a carrier. THE MOST IMPORTANT THING I HAVE TO SAY TO YOU IS THAT THE JOYS OUTWAY THE NEGATIVES. Sometimes you have to look to the long-run, but it's true! Don't give up: the potential is INCREDIBLE. Push for it! Don't just wait for it to happen. Yes, it can wear you down - so take a fun, fun, fun break (often) - as a family and/or alone, and refresh. If you remember the "most important thing," you can then get back to work. We really are all in this together! And yes, I too, often feel like we're on our own. Refresh! Don't forget the fun.

05/16/2014

Behavior Problems in Fragile X Syndrome?

Does your child with Fragile X have difficulties with problem behavior? Maybe anxiety or hyperactivity has been an issue for your child? The Irish Centre for Autism and Neurodevelopmental Research (ICAN) in National University of Ireland, Galway are interested in hearing about your experiences with your child aged 2-17 years. Even if your child doesn't have these symptoms, we can still learn a lot from your information on why some children have these symptoms and others do not. Please click below to learn more.

Dear Parent/Guardian, The aim of this study is to examine the prevalence of core co-occurring conditions which commonly present with Fragile X Syndrome (FXS) between the ages of 2 and 17 years old. These conditions are problem behaviour, anxiety issues, and attention/hyperactivity symptoms. Specific…

10/19/2012

The FX-Press will be in the Independence, MO Halloween Parade on Saturday, October 27th at 3:00 pm. We'll be watching for you! The parade will run past the south side of the courthouse.

ParadeThe Independence Chamber of Commerce holds an annual Halloween Parade on the Historic Independence Square. The Halloween Parade consist of local businesses, organizations, and community

09/19/2012

Three upcoming events for the Fragile X-Press Barrel Train:
9/29 - Homecoming Parade for Wm. Chrisman High School (Special Olympics Floatilla) on the Historic Square at Independence, MO
9/30 - Ascension Lutheran Church Picnic, 4800 Blue Ridge Blvd, KCMO
10/27 - Independence Halloween Parade, Historic Square at Independence, MO (There WILL be candy for the kids!)
***Both parade events are open to the public and free of charge. If anyone is interested in joining us in the Halloween parade, please message me for details.

09/11/2012

The Thompson Center for Autism is located in Columbia, MO. About a year ago, they became a location for Fragile X related clinical trials, such as STX209.

The MU Thompson Center for Autism is one of the nation's leading autism centers, combining treatment, training and research. Starting in September,

09/09/2012

Went great today at the Touch-A-Truck event! The kids were all over the Fragile X-Press Barrel Train. We went 3 hours straight and there was always someone on it. My dad was substitute driver since I'm still "on the mend." I think he had as much fun as the kids did.

09/07/2012

Touch-A-Truck at the Independence Events Center Sept. 8th, 10am til1pm. The Fragile X Press Barrel Train will be there raising money to help build a fully-accessible playground at McCoy Park. Come out and See Us!!!

09/05/2012

To ALL our friends within 50 or so miles of Independence, MO... We'll have the Fragile X-Press Barrel Train at the Independence Events Center for the "Touch-A-Truck" fundraiser this Saturday, Sep 8th from 10am until 1pm. PLEASE bring the kids for a ride. The funds raised will help build an all-inclusive handicap-access playground equipment to McCoy Park near the Truman Library. We'll also have information about Fragile X, for those who need to know more!!!

08/04/2012

There is also a video located at the bottom of the page, featuring the leading FXS researchers speaking about current findings.

FOR IMMEDIATE RELEASE Contact: Robert Miller (925) 938-9300 [email protected] www.fragilex.org Recent findings regarding Fragile X are being discussed

08/04/2012

Making the connections between syndromes means there'll be connections between treatments and cures.

HEIDELBERG, 3 August 2012 – Intellectual disability due to Fragile X and Down syndromes involves similar molecular pathways report researchers in The EMBO Journal. The two disorders share disturbances in the molecular events that regulate the way nerve

07/25/2012

Miami sunrise...