Fragile X News
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Posted at May 16, 2013 | Categories : Keeping You Informed,News Reports and Commentaries | 26 Comments -
Everybody’s Walking!
We are so grateful for the hard work that so many do to make these walks so successful. Everyone benefits – the NFXF, the individuals and the LINKS groups, the walkers (& runners and hikers) and their fans and the communities that participate – thank you all!
. . . Read More: Everybody's Walking!
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Webinar: Let’s Talk Medication for Fragile X Syndrome featuring Dr. Craig Erickson
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.
. . . Read More: Webinar: Let's Talk Medication for Fragile X Syndrome featuring Dr. Craig Erickson
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Advocacy From Home: How to Establish Fragile X Awareness Day
We often hear from parents who say they really wish they could do more for Fragile X awareness but cannot due to lack of time, money or childcare. So we are here to say there are multiple ways to get involved and spread awareness right from your own home. One terrific way is to establish a Fragile X Awareness Day in your state. It may sound intimidating but the process is not really a difficult one.
. . . Read More: Advocacy From Home: How to Establish Fragile X Awareness Day
Posted at May 13, 2013 | Categories : Central Illinois,Eastern Massachusetts,Public Policy and Legislative Advocacy | 6 Comments -
Invite Your Members of Congress to a Fragile X Roundtable Discussion
On May 17th, Representatives Gregg Harper and Eliot Engel will be hosting a Roundtable discussion on Fragile X and autism for members of Congress and their staff. Please send an email today to invite your Members of Congress to this important event.
. . . Read More: Invite Your Members of Congress to a Fragile X Roundtable Discussion
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A 10-Year Roaring Success for Central IL LINKS Group’s Annual Walk!
Ten years ago, Andrea (Schnarr) Wronkiewicz approached me about hosting a Walk for Fragile X in honor of my children—Parker and Allison—as her senior high school class project. That first walk brought together 150 people and raised $5,500. Our group—the Central IL Fragile X Group, with my co-leader Amy Zeleznik—partnered with Andrea again on Saturday, April 20, to host the 10th Annual Walk for Fragile X in Canton, IL.
. . . Read More: A 10-Year Roaring Success for Central IL LINKS Group’s Annual Walk!
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Seaside Therapeutics Comments on News Report of “Failed” Autism Drug Trial
After the International Meeting for Autism Research in Spain, the news organization Reuters published an article titled “Key trial of Seaside autism drug fails to show benefit.” In order to provide context and help the FX community better understand the trial results of this drug with potential applicability to fragile X syndrome, the
. . . Read More: Seaside Therapeutics Comments on News Report of “Failed” Autism Drug Trial
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Kennedy Krieger in MD Looking for Children 5-13 with Fragile X Syndrome
Got Fragile X? Participate in a New Clinical Trial for Children with Fragile X Syndrome! Kennedy Krieger Institute is looking for children, ages 5 through 13 years, with fragile X syndrome to participate in a research study. Purpose The purpose of this study is to determine if an investigational drug is a safe and effective treatment for symptoms associated with fragile X syndrome. Procedures
. . . Read More: Kennedy Krieger in MD Looking for Children 5-13 with Fragile X Syndrome
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Sertraline Study for 24-60 Month Old Children with Fragile X Syndrome
Sertraline Study - Clinical Trials We are actively recruiting children diagnosed with FXS between 24-60 months old to participate in a groundbreaking study! We have preliminary evidence that sertraline, a selective serotonin reuptake inhibitor (SSRI) is beneficial for langauge development in young children with FXS. It is our hope that this study will lead to a
. . . Read More: Sertraline Study for 24-60 Month Old Children with Fragile X Syndrome
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Proclaiming Fragile X Awareness Day At Home Plate in Fenway Park
Tuesday, April 23 was a proud day for Fragile X. That’s when Denise Devine of the Fragile X Resource Center of Western Massachusetts and my husband, Eric Welin, of the Fragile X LINKS Group of Eastern Massachusetts, stepped onto the field at Fenway Park in Boston, accompanied by our son, Caleb. They stood together behind home plate
. . . Read More: Proclaiming Fragile X Awareness Day At Home Plate in Fenway Park
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Seaside Therapeutics Announces End of Arbaclofen (STX209) Extension Study
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 STX209 (arbaclofen) in Subjects with Fragile X Syndrome] is being terminated. The closure of the study is due to resource limitations at Seaside Therapeutics, Inc., and is not related to
. . . Read More: Seaside Therapeutics Announces End of Arbaclofen (STX209) Extension Study