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Below you will find blog posts of Hope & Inspiration written from some of the strong and distinctive voices within the Fragile X community. We added this section as part of the Fragile X Awareness Day Campaign for 2012. Our goal is to continue to provide readers with stories that not only inspire but also inform and educate—sometimes with poignant, uplifting tales and other times with helpful tips and lessons about all facets of Fragile X-associated Disorders. Our writers will come from all walks of life: parents, grandparents, mothers, fathers, self-advocates, siblings. These stories inspire us at the NFXF to continue fostering the awareness that has done so much to lift up this uncommonly dedicated and involved community.
Please come back often, as we will continue to update this site with more posts through Fragile X Awareness Month and beyond!
Our past Awareness Day efforts, including the 2011 campaign Faces of Fragile X, have greatly expanded the reach and knowledge of Fragile X in the general population, the scientific community and in Congress. This has helped lead to steadily increasing research funding and now, multiple clinical trials of promising new treatments for the approximately 1 million Americans impacted by Fragile X. Please help move these efforts forward by contributing to the Awareness Day Fund.
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. It’s hard to remember what it felt like to be completely unaware of this amazing world that we are now a part of. Don’t get
. . . Read More: Finding Hope in My Children
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
. . . Read More: A Vision
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.
. . . Read More: A Journey to Hope