The NFXF Blog
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
Fragile X DNA analysis is one of the most commonly ordered medical genetic tests. It is recommended as a standard part of the genetic work-up of children with developmental delay, autism or intellectual disability. Adult neurologists and reproductive specialists increasingly recommend Fragile X testing, as awareness has grown about Fragile X-associated Tremor Ataxia Syndrome (FXTAS) and Fragile X-associated Primary Ovarian Insufficiency (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!
NFXF Webinar: 2021 Industry Updates
We held an NFXF Webinar with three of our industry partners working on treatments for Fragile X syndrome. Each shared the most up-to-date information on their research project(s) in a way that is understood by those who aren’t steeped in drug research day in and day out. A short Q&A followed each presentation.
Study: Memory Game in Children with FXS
A study to learn about memory and memory development in children with Fragile X syndrome.
An Xtraordinary Employee: Zachary
Meet an xtraordinary employee, Zach, who turned his love of animals into his perfect job at the Monterey Zoo.
Talking with Your Daughter About Her Fragile X Syndrome Diagnosis
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.