The NFXF Blog
CA: X-Strides Norcal 5K
X-Strides Northern California 5K Date: July 15, 2017 Time: 9:00 AM - 2:00 PM Location: Lake Merritt 568 Bellevue Ave Oakland, CA 94610 Hosts: Fragile X Northern California Cost: Adult (ages 16 and over): $25.00 [...]
Journal of Neurodevelopmental Disorders Discusses Fragile X Research in New Articles
The Journal of Neurodevelopmental Disorders published four important articles this week which describe various steps in Fragile X research from gene discovery to potential treatment in Fragile X syndrome (FXS). FXS is one of the [...]
St. Louis Holds Its Annual Walk and Shaves Our CEO’s Head!
[mpc_image preset="preset_2" image="28100" image_size="700_thumb" image_opacity="100" image_inner_border_gap="0" effect="none" image_hover_opacity="100"] June 2-3, 2017 – Members of the Fragile X Resource Center of Missouri gathered at the Celebrating Life Cake Boutique on Friday, June 2, to welcome [...]
Letter to Congress on Budgets and Healthcare
A copy of a letter sent to Congress on June 13, 2017.
Jen Newsome: Making Strides for Fragile X
Thank you to Jen Newsome of the NFXF’s Fragile X Association of Southern California. After an active role in the group, she took on a leadership role and has lead the group to provide many [...]
A Successful Fragile X Conference in Seattle
[mpc_image preset="preset_2" image="28095" padding_divider="true" padding_css="padding-bottom:15px;" image_size="700_thumb" image_opacity="100" image_inner_border_gap="0" effect="none" image_hover_opacity="100"] Another great conference in the Northwest Region this year hosted by Fragile X Association of WA State! It was an honor and privilege to [...]
Moms Night Out: Burgers with Buddies!
May 11, 2017 - Moms of children with Fragile X met at the Artisanal Burger Company to spend time with friends while enjoying delicious handcrafted burgers made with fresh, local ingredients. The moms, Madelene, Orna, [...]
Managing Difficult Back-to-School Transitions for Students With Fragile X Syndrome
Several strategies can help in guiding a successful transition. Though if the student changes schools, neighborhoods, or programs, additional support is required.
The Future of Fragile X Syndrome
Research Summary // The present challenge is to move from accurate diagnosis to public health action for FXS, requiring better understanding of the natural history of FXS.
11 Tips for When Your Young Adult Moves Out
Your child must learn to depend on someone other than you. It's an emotional time, but their independence is what you've been working toward all these years.
Genetics 101: Fragile X Inheritance — Webinar
Whether you’re a newly-diagnosed family in the fragile X community or have been living with the diagnosis for several years, please join us as we speak with Brenda Finucane (Geisinger, ADMI Associate Director & Professor) about the nuts and bolts of Fragile X inheritance.
Summary of Guidelines for Establishing a Private Home
Some families may not want their child to live in a home/facility that is offered by the local disability organization.