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Potential FXS Drug Receives Orphan Drug Status

Yesterday, the drug BPN14770, which is in development for possible treatment of Fragile X syndrome, was granted orphan drug status by the FDA. As the patient advocacy organization for Fragile X, the NFXF will be [...]

By | 2018-04-04T16:27:54+00:00 Apr 4, 2018|FXS, Research|Comments Off on Potential FXS Drug Receives Orphan Drug Status

Living Settings for Adults with FXS

As your child grows into a young adult, you may consider independent or semi-independent living settings. There are a variety of living settings across the United States for people with developmental disabilities.

By | 2017-03-15T11:41:33+00:00 Mar 15, 2017|Adolescents and Adults, FXS|Comments Off on Living Settings for Adults with FXS

The Uniqueness of Females with Fragile X Syndrome

Virtually all of my previous columns have addressed in one way or another the behavioral issues of males with Fragile X syndrome (FXS). That is largely because males experience both greater frequency and severity of symptoms. However females with FXS do present a variety of challenges as well so this special, expanded column will be dedicated to addressing some of them.

By | 2019-04-18T20:05:04+00:00 Jan 11, 2017|FXS|Comments Off on The Uniqueness of Females with Fragile X Syndrome

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

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.

By | 2016-08-31T11:00:42+00:00 Aug 31, 2016|FXS, Support and Resources|Comments Off on Visual Wizardry: Using Visual Supports to Change your Child’s Life

Public or Private?

How do we prepare children and adolescents to access their communities,without running the risk of their being exploited, or showing affection in inappropriate ways, using sexual language that may be misconstrued, or touching body parts that could bring legal action, or at the very least a disgruntled public?

By | 2017-08-18T13:54:16+00:00 Jun 27, 2016|Behavior, Braden on Behavior, FXS, Treatment and Intervention|Comments Off on Public or Private?

Guardianship for Your Child

At the age of 18, children become legal adults, which means that you – as a parent – are no longer your child’s legal guardian, even if they have Fragile X. In order to continue helping your child take care of his or her self, make decisions in your child’s own best interests and handle their assets, you have to initiate a process of assuming legal guardianship of your child.

By | 2016-05-25T11:00:00+00:00 May 25, 2016|Adolescents and Adults, FXS|Comments Off on Guardianship for Your Child

The Many Functions of Perseveration

Anyone who lives with a person with Fragile X is very familiar with this continuation of a repeated word or phrase. This repetition can be maddening when you are the recipient. At face value, perseveration has no redeeming features and simply serves as an irritant, but in the life of one with Fragile X syndrome (FXS), it can be a valuable asset. Perseverative verbiage often accompanies arousal and acts as a buffer to reduce the anxiety. The repetition can be comforting like a mantra or song.

By | 2016-04-28T14:51:41+00:00 Apr 28, 2016|FXS|Comments Off on The Many Functions of Perseveration

The Magic Continues: Helpful Tool for Children with Fragile X to be Turned into App

In 2014, Sarah Moelis and her brother, Ben, exhibited "The Magic Arrows," a game that Sarah, Ben, Hailey Silver and J.D. Gebbia invented. The game helps children with Fragile X syndrome organize their daily activities, easing the anxiety often triggered by transitioning from one activity to another. Sarah is on-course to unveil the commercial release of "The Magic Arrows" app before the start of conference. Sarah is looking for volunteer families who are part of the Fragile X community to be part of a limited test group this June. Volunteers will use the 1.0 version of the app and provide feedback.

By | 2016-04-19T16:33:05+00:00 Apr 19, 2016|FXS, Technology|Comments Off on The Magic Continues: Helpful Tool for Children with Fragile X to be Turned into App

Talking with Your Children about Fragile X: Why, How, and When?

When parents first learn about Fragile X, their primary focus is on the meaning of the diagnosis for their child with the syndrome. Once the dust settles though, they begin to think about the genetic implications for other family members, and in particular, for typically developing siblings who may or may not carry a Fragile X mutation.

By | 2016-03-30T12:35:03+00:00 Mar 30, 2016|FXS|Comments Off on Talking with Your Children about Fragile X: Why, How, and When?

Neuren’s Trofinetide Successful in Phase 2 Clinical Trial in Fragile X Syndrome

I was honored to have been invited to represent the Fragile X community and the NFXF at the recent meeting sponsored by Neuren Pharmaceuticals, in which they shared some very encouraging news regarding their Phase [...]

By | 2015-12-07T17:33:48+00:00 Dec 7, 2015|FXS, In the News, News Reports and Commentaries|Comments Off on Neuren’s Trofinetide Successful in Phase 2 Clinical Trial in Fragile X Syndrome
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