The NFXF Blog
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.
MySpa Welcomes the 13th International Fragile X Conference
MySpa at the InterContinental Hotel has graciously offered discounted prices off of their massages for conference goers, and we'd like to share them with you. Because you do have time... please take advantage of our [...]
RSVP to Mission to Lars Screening
Do you plan on watching Mission to Lars with us? We'd like to get a headcount of the number of attendees, so please let us know if you're going by Friday, July 20, 2012! The [...]
Preparing Yourself for the 13th International Fragile X Conference: Emotional Aspect and Making Friends
Join experienced parents and conference-goers -- Jayne Dixon Weber, Arlene Cohen, and Michele Kaplan -- on our newest podcasts as they give you the lowdown on how to prepare for the 13th International Fragile X [...]