Fragile X News
-
MA Fragile X Educational Conference
Hyperarousal & Sensory Integration Strategies for Home and School Date: Saturday, April 14, 2012 Time: 8:00 AM - 4:00 PM Where: Arthur and Martha Pappas Amphitheatre University of Massachusetts Medical School 55 Lake Avenue North Worcester, MA 01655 Hosted by: Fragile X LINKS Group of Eastern Massachusetts Fragile X Resource Center
. . . Read More: MA Fragile X Educational Conference
-
Investigational Drug Study for Children with Fragile X Syndrome – Baltimore
Kennedy Krieger Institute is looking for children, ages 5 through 11 years, with fragile X syndrome to participate in a research study. The purpose of this study is to determine if an investigational drug, arbaclofen, is an effective treatment for social withdrawal symptoms associated with fragile X syndrome. This study will also assess whether arbaclofen is safe and tolerated by individuals with fragile X syndrome. Social
. . . Read More: Investigational Drug Study for Children with Fragile X Syndrome – Baltimore
-
Does Your Adolescent or Young Adult Have Fragile X Syndrome?
New Stanford Treatment Study Focused on Fragile X Syndrome Adolescents and Young Adults with Fragile X Syndrome Age 12-29 Years Needed We are recruiting females and males between the ages of 12 and 29 years to participate in a newly funded medication study in fragile X syndrome. Participants will have the opportunity to receive the medication, donepezil, which may improve cognition and behavior in individuals with this important condition.
. . . Read More: Does Your Adolescent or Young Adult Have Fragile X Syndrome?
-
2012 LINKS Group Action Grants
The National Fragile X Foundation recognizes that upfront expenses are often required to organize an activity that will mutually benefit members of a local Fragile X community and create awareness about Fragile X in the community at large. The Action Grants were initially funded by the generous support of LINKS network members: The Fragile X Society of Connecticut The Fragile X Association of New Jersey The Fragile
. . . Read More: 2012 LINKS Group Action Grants
-
Save the Date! Tracy & Mouse are coming back to Massachusetts!
Fragile X Educational Conference Hosted by: Saturday, April 14, 2012 Featuring Special Guest Speakers Tracy Stackhouse and Mouse Scharfenaker from Developmental FX! Tracy and Mouse will be speaking about core issues in fragile X syndrome with a focus on understanding and managing hyperarousal. Information shared will have application for parents and professionals across home, school and community settings throughout the lifespan. Location UMASS Worcester Medical School More
. . . Read More: Save the Date! Tracy & Mouse are coming back to Massachusetts!
-
Spotlight on LINKS Groups: The Fragile X LINKS Group of Kansas City
Tim and Angela Lunceford are the parents of four children. Their oldest daughter, Erin (25), is also a carrier with a son, Caleb (4), who is affected by fragile X syndrome (FXS), and a daughter, Abbie (3), who is a carrier. Our daughter, Jenni (24), and two sons, T.J. (19) and Michael (16), are affected. They also have a
. . . Read More: Spotlight on LINKS Groups: The Fragile X LINKS Group of Kansas City
-
Meeting of the Fragile X Clinical & Research Consortium
Robert Miller National Fragile X Foundation Member of the FXCRC Steering Committee I recently returned from a meeting of the Fragile X Clinical & Research Consortium in Houston where my NFXF colleagues Sharon Kidd, Jayne Dixon Weber, Jeffrey Cohen and Brad Whitus joined me, the CDC and representatives from 23 of the 25 U.S. clinics. Parents from the Fragile X Alliance of Texas hosted a Texas style BBQ the night before which set the
. . . Read More: Meeting of the Fragile X Clinical & Research Consortium
-
Public Policy Is for People!
"Public Policy Is for People!" reflects a fundamental truth about the legislative advocacy efforts we pursue at the National Fragile X Foundation. Yes, "public policy" may sound like a forgettable chapter in your high school civics class. But in reality, it dramatically affects the everyday welfare and future hopes of every person in the Fragile X community. That's why we are writing
. . . Read More: Public Policy Is for People!
-
URGENT: National Institutes of Health call for Update to Fragile X Research Plan
The National Institutes of Health (NIH) has asked the National Fragile X Foundation to help organize feedback regarding the aims and future direction of the Research Plan for Fragile X Syndrome and Associated Disorders. Therefore, we are reaching out to basic and clinical researchers, clinicians and family members for their thoughts and feedback. We will then organize the written responses into a formal response. The deadline for
. . . Read More: URGENT: National Institutes of Health call for Update to Fragile X Research Plan
-
TASH Webinar Series on Building Inclusive High School Communities
TASH invites you to learn about Building Inclusive High School Communities by participating in this exclusive webinar series featuring leading experts on inclusive education. Creating a truly inclusive high school can be an arduous and complex process, especially as schools already face the challenge of raising academic standards through rigorous, high-stakes testing. But as the gateway to adult life, high school should embrace and support all
. . . Read More: TASH Webinar Series on Building Inclusive High School Communities
Stay Connected
