The NFXF Blog
Congratulations to the NFXF Awards Recipients
Congratulations to the 2012 National Fragile X Foundation Awards Recipients! LINKS Leader Award for significant contributions to the awareness of Fragile X (Until 2012 called the Education & Awareness Award) Diane Southard Diane Southard [...]
Study on Transition from Adolescence to Adulthood
The University of South Carolina recruiting participants for an online study to help identify policies and services needing to be more responsive to your needs and experiences. They are studying the health and participation in various life activities (school, work, family and community life).
LINKS Leaders Daughter Attends First-Ever Kids' White House "State Dinner"
Lauren Kuperman, a seventh grader at Pleasant Hill Middle School in Lexington, SC was one of 54 kids to attend a "State Dinner" at the White House on August 20 as a winner of a [...]
ScienceDaily: Fragile X and Down Syndromes Share Signalling Pathway for Intellectual Disability
NFXF Scientific & Clinical Advisory Committee member Dr. Elizabeth Berry-Kravis had the following to share about the ScienceDaily report recently published. This news article is a little confusing when it implies that treatments for Fragile [...]
Public Health Impact of Fragile X Mutation and New Clues on Root Cause of Autism
FOR IMMEDIATE RELEASE Contact: Robert Miller 925-938-9300 robmiller@fragilex.org www.fragilex.org Recent findings regarding Fragile X are being discussed at the 13th International Fragile X Conference in Miami. These include that many of the approximately one million [...]
Executive Director Robert Miller Talks About the Conference
Hello everyone. I know that many of you are preparing for your trip to the 13th International Fragile X Conference in Miami. This is my 7th conference as executive director but I am as excited now as I was for that first one back in 2000. (Los Angeles) I also know that many of you will not be able to join us this year. For both groups, I want reassure you that we will do our best to see that much of the conference content is made available in the months following the conference. While that doesn’t replace the incredible value of the connections that are made when you can attend in person, it is still our goal that everyone has access to the latest information.
Saturday Night: Live Auction Items
On Saturday night at the conference, there will be a Live Auction with many incredible items and experiences up for bid, including getaways and special visits with world renowned experts. Here are the possible [...]
World-Renowned Fragile X Experts to Announce Major Breakthrough Findings July 26
FOR IMMEDIATE RELEASE Contact: Ted Coutilish (734) 320-7981 tcoutilish@fragilex.org www.fragilex.org MEDIA ADVISORY WHO: National Fragile X Foundation, www.fragilex.org WHAT: Press Conference on Major Announcements Related to Premutation and Autism WHEN: Thursday, July 26, 3:20 p.m. [...]
Hotel Check-In, Fitness Centers, Parking and more
Here are some information about the hotels for this year's conference: InterContinental Hotel Check-in is 4 PM Check-out is 12 noon. Free WiFi for all registered guests of the conference. You will be given a [...]
Finding Hope in My Children
It’s hard to believe that it has been more than nine years since Parker and Allison were diagnosed with Fragile X syndrome. It’s harder to believe that there was a time when my family and friends didn’t know what FXS or a Fragile X-associated Disorder was — and neither did I.
A Vision
When I was pregnant with my son I had many visions of our future. I envisioned watching him learn to walk and talk, hearing him say "I love you" for the first time, teaching him to read, and reading books from my childhood to him. I envisioned standing at a bus stop holding his hand on the first day of kindergarten. I envisioned sleepovers. I envisioned my husband teaching him to drive a car. I envisioned nagging him about his long hair or dirty room. I envisioned watching him graduate from high school and college. I envisioned him getting married. I envisioned him making me a grandmother.
A Journey to Hope
When our family began our journey in the Fragile X world in 1991, I could not say that I had a lot of hope for our two boys’ future. Everything was so full of uncertainty. Questions surrounded our family’s life and what the future would hold. If I had completely given into doubt, I would have lost momentum toward attaining any kind of hope.