2013 | Page 4 of 7 | National Fragile X Foundation

Let's Talk Medication For Fragile X Syndrome

By NFXF|2013-07-08T15:01:31-04:00Jul 8, 2013|Webinar|

Given the great number of medications in the market that address specific issues with fragile X syndrome, the world of treatment can be tough for parents and other caregivers to navigate. One of the most frequent questions they ask is, "Which medication is best for my child?" The National Fragile X Foundation is pleased to address this topic in the first of its series of "Let's Talk" webinars. "Let's Talk Medication for Fragile X Syndrome" features Dr. Craig Erickson, a noted Fragile X expert and medical director of the Fragile X Clinic in Cincinnati, Ohio.

What Defines a Carrier?

By NFXF|2023-05-18T13:08:03-04:00Jun 26, 2013|Genetics and Inheritance, Premutation|

Why is there so much variability among male and female Fragile X carriers? There are a number of factors involved. Because the Fragile X gene is X-linked, gender plays a big role in determining who might show symptoms. Male premutation carriers, because they have only one X chromosome, are much more commonly affected by FXTAS than are female carriers.

Walking, Running, and Hiking for a Cause! And the 2012 Annual Report!

By NFXF|2013-06-19T12:38:56-04:00Jun 19, 2013|Appalachians, Community Support Network, Fundraiser, Northern Virginia, St. Louis, Tri Cities|

Focus on Fundraisers If you haven’t heard by now, we are hosting our first annual “Let ‘Em Know Virtual 5k Run/Walk for Fragile X” in honor of National Fragile X Awareness month in July! Thanks [...]

Research: MIND Institute Cognitive Training for Fragile X Syndrome

By NFXF|2013-06-19T10:31:16-04:00Jun 19, 2013|Opportunities for Families|

UC Davis MIND Institute Cognitive Training for Fragile X Syndrome We are conducting a study to determine if a computer-based and game-oriented training program will enhance the working memory skills of children and adolescents [...]

A Bump in the Drug Therapy Road: What Can Advocates Do?

By NFXF|2013-06-18T16:27:33-04:00Jun 18, 2013|Advocacy, Seaside STX209|

Note: Just before I wrote this article, a group of parents that Margaret Mead could have easily been describing when she penned her most famous quote ("Never doubt that a small group of committed people [...]

Stanford Study on Problem Behaviors in Adolescents with Fragile X

By NFXF|2013-06-13T07:38:57-04:00Jun 13, 2013|Opportunities for Families|

Stanford School of Medicine The Center for Interdisciplinary Brain Sciences Research (CIBSR) at Stanford University would like to invite you to take part in an exciting new research opportunity available to families who have [...]

Study on Spoken Language in Children, Adolescents, and Young Adults with Fragile X Syndrome

By NFXF|2013-06-12T09:58:06-04:00Jun 12, 2013|Opportunities for Families|

MIND Institute University of California, Davis If you have a son or daughter with Fragile X syndrome between 6 and 23 years of age, you and your child are invited to participate in a [...]

Ongoing Studies at the Fragile X Treatment Research Program at Vanderbilt University

By NFXF|2013-06-11T11:24:13-04:00Jun 11, 2013|Opportunities for Families|

Fragile X Treatment Research Program at Vanderbilt University Dear Member of the Fragile X Community, We are contacting you to let you know about a research program at Vanderbilt University. This program studies new [...]

NY Times : An Experimental Drug’s Bitter End

By NFXF|2013-06-07T15:18:51-04:00Jun 7, 2013|Keeping You Informed, Seaside STX209|

Photo by Daniel Acker for the New York Times On the front page of the Business section of the June 7 New York Times was an article regarding Seaside Therapeutics' ending of the [...]

LINKing Up for Summer Social Events!

By NFXF|2013-06-03T09:21:58-04:00Jun 3, 2013|Community Support Network|

Central CA FX Links Group enjoys its first event! Summer is almost here and our LINKS groups are in full swing with lots of summer activities! The events calendar has been filling up [...]

Behavior Modification in the Classroom

By NFXF|2023-03-13T14:30:53-04:00May 30, 2013|Behavior, Braden on Behavior, School and Education, Treatment and Intervention|

Watching a student with FXS struggle is difficult when their behavior is affected by those characteristics that make up the Fragile X phenotype.

NFXF Let 'Em Know 5K

By NFXF|2013-05-24T07:11:55-04:00May 24, 2013|Awareness Day|

Virtual Run/Walk for Fragile X Our mission: To raise awareness about Fragile X! We need your help to “Let ’Em Know” and make that happen! This isn’t about how fast or slow you are, instead [...]

An Update from Seaside 5/22

By NFXF|2013-05-23T08:35:28-04:00May 23, 2013|Keeping You Informed, Seaside STX209|

Yesterday we received the following messages from Paul Wang, Vice President, Clinical & Medical Affairs at Seaside Therapeutics, Inc. Dear all - I wanted to let you know about a letter that we just posted [...]

Open Letter to the FX Community about Seaside Arbaclofen (STX209)

By NFXF|2013-05-18T09:01:37-04:00May 18, 2013|News Reports and Commentaries, Seaside STX209|

To our Fragile X family: Many of you by now have heard the news that Seaside Therapeutics has decided to end their extension of the trial medication known as Arbaclofen (STX209). The NFXF Board of [...]

Seaside Therapeutics Announces End of Arbaclofen (STX209) Extension Study

By NFXF|2013-05-16T11:03:00-04:00May 16, 2013|Keeping You Informed, News Reports and Commentaries, Seaside STX209|

Late yesterday afternoon the NFXF, along with all of the study locations, was contacted by Seaside Therapeutics and informed that the “Study 209FX303 [An Open-Label Extension Study to Evaluate the Safety, Tolerability, and Pharmacokinetics of [...]

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