The NFXF Blog
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 [...]
Preparing Yourself for the 13th International Fragile X Conference: What the Conference is Like and Activities
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 [...]
Preparing Yourself for the 13th International Fragile X Conference: Getting Ready and Registration
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 [...]
Today is the Last day for Online Registrations for the Conference
Register online before midnight tonight! After today July 11, 2012 we will be closing online registration, so make sure that you're registered! There will be limited registration available at the door, but we cannot guarantee [...]
International Fragile X Conference Reminders
June 2012 We’re less than a month away from setting sail for Miami so we hope you’ve already registered! If not, late online registration is still open until July 11, 2012. Afterwards, you must register [...]
Strategies for Day-to-Day Life
Mouse and Tracy present day-to-day strategies they've drawn from their evidenced-based practice and knowledge of the neurocognitive development of children with Fragile X syndrome.
A Response to Dr. Manny and His Cautions About Drugs for Autism and FXS
Robert Miller Executive Director National Fragile X Foundation Some of you may have recently read an online commentary by nationally syndicated, Foxnews.com columnist Dr. Manny Alvarez. Not only does “Dr. Manny,” as he [...]