The NFXF Blog
Make a Difference at Advocacy Day 2012
Advocacy Day 2012 is just around the corner. The date is March 6-7, 2012 and as in prior years training will be held on Tuesday (March 6) from 1-5pm and Congressional visits will be scheduled [...]
Self-Regulation Through the Life Span
Join the National Fragile X Foundation’s Executive Direct, Robert Miller and Coordinator of Support Services, Jayne Dixon Weber as they interview LINKS Group Leader and Fragile X parent Laureen Majeske and Developmental FX’s Tracy Stackhouse and Sarah “Mouse” Scharfenaker for a discussion on how self-regulation makes things work for Fragile X.
Parent/Caregiver Support Meeting in Western NY on Nov. 7, 2011
Please join us for a parent and caregiver support meeting on Monday November 7, 2011 hosted by the Fragile X Resource Group of Western New York. Date and Time Monday, November 7, 2011 7:00 pm [...]
Call for Abstracts for 2012 Conference
The National Fragile X Foundation invites all persons interested in Fragile X to submit abstracts to be considered for presentation at the 13th International Fragile X Conference. Submissions will be accepted from October 14, 2011 [...]
Study Recruitment: Children & Adults with Fragile X Syndrome Nashville's Fragile X Treatment Research Program, Vanderbilt University
This announcement has been posted as a courtesy by the National Fragile X Foundation (NFXF) on behalf of Nashville's Fragile X Treatment Research Program at Vanderbilt University. The announcement and the parties conducting and sponsoring [...]
13th International Fragile X Conference information is now online!
The 13th International Fragile X Conference section of our site has now been published. This year's conference will be in Miami, Florida from July 25-29, 2012 at the InterContinential Hotel. We have posted all of [...]
Fragile X Syndrome: Research into Fragile X Syndrome, a common cause of inherited intellectual disability, is starting to generate treatments
The current issue of Neurology Now contains a six page article explaining Fragile X syndrome, the history of Fragile X research and the current status of that research. Our very own Holly Roos is featured. [...]
These Fragile X groups want to know more about you
Several of our Fragile X LINKS Groups have short online surveys for local families to take so that they can stay up to date with your needs and interests. Your feedback is important [...]
Share about a transition point in your life
The National Fragile X Foundation is looking people to share a first-person story from parents/family members point of view facing specific transition points. Submissions will be considered for inclusion into the Fragile X Quarterly and other future foundation communications.
Maximizing Your Child's Educational Experience with Individualized Education Plans
Join us as we speak with Vicki Sudhalter, PhD, about Individualized Education Plans (IEP). Hosted by Robert Miller with Jayne Dixon Weber. The Individualized Education Plan (IEP) is a very influential document in the academic [...]
Public Policy Update: 2012 Federal Budget and Fragile X
By Jeffrey Cohen Director of Governmental Affairs and Advocacy, NFXF The 2012 federal budget remains an unsettled matter. The 2011 fiscal year ends on 9/30 and 2012 begins on 10/1. Under “normal” circumstances the 2012 [...]
Upcoming Events for October 2011
Here are highlights of upcoming Fragile X Events in the month of October and the beginning of November. Check out our Events Calendar to see what else is going on. Click on each event link [...]