Routine activities such as working at a paying job, volunteering, or participating in a day program are all good options. Here we provide some tips to figure out what type of activities are best for your child.
We asked this year’s four NFXF Summer Scholars — Collis Brown, John Burwinkle, Bonnie McKinnon, and Elizabeth Saoud — to summarize their summer project in a 15-minute video presentation, and here they are!
Are you wondering when and how to talk to your daughter about her Fragile X syndrome diagnosis? If so, you are not alone. Here are some strategies to help in talking about your daughter’s FXS diagnosis with her.
Helping your young adult transition out of school and into a new job can be overwhelming, we have some tips and resources to make it a little easier for both of you.
It looks like in many places that we are back to wearing masks or will be soon. It may be for school, but in many cases, masks are being required for any activity that is indoors. I am guessing that, in the past couple of months, many of us got used to not wearing masks. So, for at least in our family, it is going to be a transition back to wearing them.
CDC Awards $4 Million Cooperative Agreement to Build on the Work of the FORWARD FXS Natural History Study!
A $4 million cooperative agreement to “Characterize the Natural History of Fragile X Syndrome to Inform the Development of Intervention and Outcome Measures” was awarded to Dr. Elizabeth Berry-Kravis of Rush University Medical Center by the Centers for Disease Control and Prevention (CDC).
Join us for the live, virtual closing ceremony of the 2021 X Strides. We will have prizes, awards, and more. It is a can't miss event! Thank you to everyone who helped raise awareness for Fragile X.
The Spatial Development Lab at Montclair State University is conducting a research study to learn about spatial abilities, such as why we sometimes get lost in the environment. About the Study Who can participate? ...
Dr. Anne Wheeler will provide an overview of the literature on stress vulnerability in women with a premutation, describe how mindfulness-based techniques can be helpful for stress-reduction, allow for some experiential practice of these techniques, and provide practical resources for increasing mindfulness, reducing stress, and improving overall well-being.
As a geneticist and academic, Warren’s contributions to the understanding of Fragile X and to the broader Fragile X community are immense. In addition to being a gifted scientist, he was an outstanding leader, mentor, and friend who will be greatly missed.
Dr. Marcia Braden joins us to discuss Females and Fragile X syndrome (FXS). This webinar helps you better understand the features associated with the syndrome. Information processing, cognitive strengths and weakness as well as social issues are identified. Strategies to address common challenges are also discussed.
On behalf of the NFXF Board of Directors, I am excited to welcome our newest class of directors for 2021. This group of individuals have all been active members of our Fragile X community for many years and contribute in all areas of outreach.