The NFXF Blog
Free, Customizable Holiday Card Templates
For this year's Giving Tuesday we're following on a tradition we started last year. Giving something to you, the Fragile X community. Choose from one of our four holiday designs for your Christmas, holiday, Hannukah, or new year card.
It’s All About Employ-Ability!
Paula Fasciano and friends opened Bake Ability so they could give employment opportunities to individuals with intellectual and developmental disabilities.
2021 NFXF Webinar Series: Fragile X Premutation
Dr. Randi Hagerman joins us to discuss the latest information and research on premutation carriers. The recording includes the Q & A session following her presentation. You can watch the video and access the additional resources.
An Update on Our Advocacy Efforts
An update on our advocacy efforts, including Advocacy Day 2022 and key legislation we are currently supporting.
2021 NFXF Webinar Series: Medication Use in Fragile X Syndrome
Collaborate with us. Families learn how behavior, communication, and sensory processing are connected. Further, families are provided with sensory, communication, and behavioral strategies that can be implemented within daily routines. An emphasis on collaborative and evidence-based practices is highlighted.
An Xtraordinary Employee: Clay
A concern for parents of children with Fragile X syndrome is their level independence as an adult. This is Clay and his mother June's story.
Understanding a Fragile X Intermediate Result
Adult neurologists and reproductive specialists increasingly recommend Fragile X testing, as awareness has grown about FXTAS and FXPOI. Fragile X carrier testing during pregnancy has also become relatively commonplace in the US and elsewhere, even for women without a family history suspicious for Fragile X disorders.
Discovering Your Young Adultʼs Strengths for a More Satisfying Career Path
First jobs are hard, and as a young adult with Fragile X syndrome it may be nearly impossible without a little help from parents and others in their lives to help them recognize their own strengths.
8 Employee Attributes to Teach Your Young Adult
Getting a new job is exciting, but young adults with Fragile X syndrome need to also understand what's expected of them at a workplace. Help them prepare by first understanding these eight guidelines.
Clinical Trial RECONNECT: ZYN002 Gel
This study will evaluate the efficacy and safety of ZYN002, a clear cannabidiol (CBD) gel that can be applied to the skin (called transdermal application) twice a day for the treatment of behavioral symptoms of Fragile X syndrome (FXS).
Life After High School: Transitions and the Importance of a Daily Schedule
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.
Congratulations to the 2021 NFXF Summer Scholar Recipients
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!