Fragile X News
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Registration for 13th International Fragile X Conference Now Open!
Please join us for the 13th International Fragile X Conference in Miami, Florida July 25– 29, 2012. Online Registration is now open! Register Early to SAVE! Register Now! Don’t miss the boat! Discover the latest research by some of the world’s leading Fragile X experts. Learn new techniques, behavioral interventions and coping strategies. Connect with researchers, clinicians, educators, psychologists and parents. Get the support you need. Start new lifelong friendships
. . . Read More: Registration for 13th International Fragile X Conference Now Open!
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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 your response to our request in February 27, 2012. There
. . . Read More: URGENT: National Institutes of Health call for Update to Fragile X Research Plan
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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
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Does Your Child Need Help to Improve His/Her Math Skills?
Standford University Research Individuals with Fragile X Syndrome Age 9-23 Years Needed We are conducting a behavioral treatment study utilizing a fun, reward-based learning paradigm to maximize your child’s learning potential. Participation involves: Coming to Stanford for 3 days Cognitive testing MRI scan Intensive behavioral intervention Inclusion criteria for participation – child must be: Between 9-23 years of age Diagnosed with fragile X syndrome Does not experience seizures Right handed (or favor his/her right hand) Able to lie still for up to 10 min with instruction Benefits of
. . . Read More: Does Your Child Need Help to Improve His/Her Math Skills?
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Kansas City LINKS Planning Meeting – February 26, 2012
Fragile X LINKS Group of Kansas City Sunday, February 26, 2012 3:00 pm The requests your help in making plans for their first ever Marbles Tournament Fundraiser! Refreshments will be provided. Location 102 S. Fuller Independence, MO 64050. Questions? Contact Angela via phone at (816) 461-3577 or email fxlinkskc@swbell.net
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A Mom’s Introduction to Advocacy Day
The following is a personal blog post written by Melissa Welin, Co-Founder of the Fragile X LINKS Group of Eastern Massachusetts giving an introduction to Advocacy Day through the eyes of a first time advocate. Melissa first attended Fragile X Advocacy Day last year and plans to be an advocate again this year. First, let me say…if you
. . . Read More: A Mom's Introduction to Advocacy Day
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Washington’s Annual FX Conference
Hosted by Fragile X Association of Washington State Saturday, February 25, 2012 9:30am - 4:00pm Location Seattle Children's Hospital 4800 Sand Point Way NE Seattle, WA 98105 Featuring Special Guest Speakers Gwen Glew, MD Developmental pediatrician at Seattle Children's Hospital and the University of Washington. She has worked in pediatrics for 15 years and is a Fellow of the American Academy of Pediatrics and a member of the Fragile X Clinical
. . . Read More: Washington's Annual FX Conference
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Start Planning Your 2012 Fundraiser Today!
With the bustle of the holiday season behind us, now is the perfect time to start planning a 2012 fundraiser! The NFXF relies on support from small events, and we look forward to assisting new fundraisers each year and watching established events grow. Organizing a fundraising event offers unique opportunities for those impacted by Fragile X. These include but are not limited to: Spreading awareness
. . . Read More: Start Planning Your 2012 Fundraiser Today!
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A Primer on Sensory Integration
Source: Foundation Quarterly, Issue 29, December 2007 Tara Mulvany, MOTR/L, CSI Sensory integration is the ability to organize light, sound, movement, and texture unconsciously and automatically, with no obvious effort. This organization is accompanied by age-appropriate behavior and emotional responses, social engagement, and cognitive reasoning skills, all of which should lead to purposeful work and play. Without sensory integration, children may
. . . Read More: A Primer on Sensory Integration
Posted at January 31, 2012 | Categories : Fragile Xtras,Sensory Integration,Treatment and Intervention | 1 Comment -
Are You Willing to Stand Up and Be Counted?
Join us in Washington, DC to inform Members of Congress that real drug treatments capable of making tangible improvements in the quality of life for individuals living with Fragile X have progressed from "theoretically possible" to "cautiously probable." –and urge them to make sure that the services to bring these developments to market - are adequately funded. We
. . . Read More: Are You Willing to Stand Up and Be Counted?
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