Yearly Archives: 2016

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Visual Wizardry: Using Visual Supports to Change your Child’s Life

By |2016-08-31T11:00:42-04:00Aug 31, 2016|FXS, Support and Resources|

Visual supports help translate the environment and expectations to an individual with FXS without requiring direct processing of language. This type of information can be processed quickly. Visual supports remain present, so they can be referred to more than one time, whereas verbal directions might be heard and then forgotten. Learning to use visual supports can help alleviate anxiety for the person with FXS and frustration for the person providing support.

Oppositional or Merely Anxious?

By |2016-08-08T08:00:38-04:00Aug 8, 2016|Braden on Behavior|

I’m often hear, “Is he just defiant, or is there something else going on? He refuses to comply, and he seems to want to manipulate me.” Children with and without Fragile X syndrome learn to maneuver in their environments in order to survive and thrive. In order to discern whether a behavior is oppositional, or merely a reaction to anxiety, pay attention to your reaction.

2016 Let 'Em Know Highline & Dine

By |2016-08-03T12:24:24-04:00Aug 3, 2016|New York City|

Twelve people, consisting of Greater New York City Community Support Network members and friends, met at the southern entrance of the Highline in Soho to complete a 1.3 mile walk to raise awareness and money for Fragile X.

Getting Inspiration from the Conference

By |2017-06-24T23:56:25-04:00Jul 27, 2016|2016|

“The National Fragile X Foundation exists to unite the Fragile X community." That is how our mission statement begins. If you were fortunate enough to attend our 15th International Fragile X Conference, I feel confident in saying we achieved our mission. I hope you feel the same.

FORWARD: A Research Project of the FXCRC

By |2016-07-12T23:11:16-04:00Jul 12, 2016|FXCRC and Clinics|

By now, many people in the greater Fragile X community have heard of the Fragile X Clinical & Research Consortium (FXCRC). Organized by the National Fragile X Foundation in 2006, it was originally called the “Fragile X Clinics Consortium,” and the emphasis was solely on establishing clinics that provided comprehensive evaluations and consensus-based treatment or treatment recommendations. All well and good and, today, there exist 29 clinics in the US. However, within the first year or two, the word “Research” was added to the consortium’s name at the urging of Dr. Don Bailey, who was then the NFXF’s board chair. Dr. Bailey was prescient in his realization that research would become an important part of the consortium’s efforts. Soon thereafter, the Centers for Disease Control (CDC) partnered with NFXF and the FXCRC, and the infrastructure was built to begin to make a real difference in our understanding of Fragile X syndrome (FXS). This article will take a look at what the FXCRC is up to as far as research is concerned.

Nebraska Launches the ENABLE National Program

By |2016-07-08T08:21:20-04:00Jul 8, 2016|Keeping You Informed|

The National Fragile X Foundation is pleased to announce that the state of Nebraska has now launched its version of an Achieving A Better Life Experience (ABLE) account. Known as the “ENABLE” national program, it offers enrollment to qualified individuals with disabilities both in Nebraska and throughout the country.

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