The NFXF Blog
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.
2017 NFXF Summer Student Fellowship Awardees
Each year, the National Fragile X Foundation funds one or more summer student research fellowships at $2500 each through the Summer Student Fellowship Research Fund.
Visiting the Dentist
I learned pretty quickly that visits to a dentist were going to be a challenge for my son, Ian. I demonstrated the process over and over again. I helped him brush his teeth, encouraged him to brush his own teeth, tried different toothbrushes and toothpaste. I needed Bonnie.
NJ: Moms' Night Out
NJ/NY Moms' Night Out Date: June 1, 2017 Time: 7:00 PM - 9:00 PM Location: Cheesecake Factory at the Mall at Short Hills 1200 Morris Turnpike Short Hills, NJ 07078 Near Macy's, on the north [...]