Fragile X Info Series | NFXF (original) (raw)

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Fragile X Info Series

Fragile X Info SeriesDany Petraska2023-04-13T08:41:26-04:00

Fragile X Info Series

Browse our available information flyers designed to be easily printable on home and office printers. We created these so you can distribute them as needed, whether it’s for a neighbor, students at school, your own reference, or you work at a clinic and want to share information with new families. Whatever the cause, they are meant to be informative and shareable.

We are continuously adding new Info Series flyers, including rolling out Spanish translations. (Estamos continuamente agregando nuevos folletos de la Serie de Información, incluyendo el lanzamiento de traducciones al español.)

Check back often, or subscribe to our email newsletters to be alerted to all our new content as it becomes available.

Two brothers hugging each other and smiling beautiful smiles.

Fragile X Fact Sheets

In addition to the Info Series documents below, we have a one-page and two-page fact sheet on Fragile X.

What is Fragile X?

In a two-page format, this fact sheet defines the Fragile X group of disorders — Fragile X syndrome, Fragile X-associated tremor/ataxia syndrome, and Fragile X-associated primary ovarian insufficiency. It also includes a list of Fragile X facts, contact information for the NFXF, and answers the questions of how Fragile X is inherited and what are the treatments for Fragile X.

Fragile X Fact Sheet

In a one-page format, this fact sheet defines the Fragile X group of disorders — Fragile X syndrome, Fragile X-associated tremor/ataxia syndrome, and Fragile X-associated primary ovarian insufficiency. It also includes facts on the prevalence and diagnosis of Fragile X, contact information for the NFXF, and answers the questions, what conditions benefit from Fragile X research? And, is there a cure?

A young boy with Fragile X syndrome wearing a black t-shirt.

Seizures in Fragile X Syndrome

An Overview

Understanding the relationship between seizures and Fragile X syndrome. In this summary, we look at the frequency and prevalence of seizures among those with Fragile X syndrome and the general population.

Clinician assessing young boy at a clinic

Introduction to Assessing Individuals with Fragile X Syndrome

An Overview

Assessing the strengths and needs of individuals with Fragile X syndrome is important for many reasons. In this summary we cover principles, strategies, limitations, and accommodations.

Hands in purple latex gloves holding 2 test tubes

Fragile X Testing

A Comprehensive Guide

A background on Fragile X and how Fragile X is inherited, plus which tests to ask for, who should get tested, and what the results may mean for you.

Young boy on a tree swing.

Getting a New Diagnosis

What Do You Do Now?

This is your guide on what to do next after learning of a new Fragile X diagnosis, including understanding the terms you find confusing or unsettling. (You may also want to visit our Newly Diagnosed page.)

Smiling baby

Fragile X Syndrome

An Overview for Families and Providers

An introduction to Fragile X, including characteristics, inheritance, behaviors, interventions and treatments, and the associated disorders.

Mom with her arms around her son's shoulders, smiling.

Fragile X Syndrome

For Kids of All Ages

Information to help kids who don’t have Fragile X syndrome understand what it is, how it affects people, how prevalent it is, why certain behaviors common to individuals with FXS occur, and how they can be a friend to someone who has FXS.

Woman and young boy sitting on the floor looking through book

Fragile X Clinics

Your In-Person Visit

A comprehensive guide and checklists on how to prepare, what to expect, questions to ask, and more.

Young boy sitting on stack of books while reading

Back-to-School Resources

For Families and Teachers

Understanding the strengths and challenges of students with Fragile X syndrome, plus ideas and resources for minimizing stress and anxiety during transitions such as a new school or teacher.

Female young adult in a pink sundress

Females and Fragile X

Full Mutation and Premutation

Females and Fragile X, including physical, cognitive, behavioral, and emotional issues associated with the mutation, and the differences when compared to males.

Siblings, a young girl and teenage boy

Siblings

The Sibling Relationship

Developmental disabilities in one sibling can present unique challenges for unaffected siblings. Just as with other disabilities, siblings of children with FXS may feel torn between two sets of feelings.

Father with FXTAS and his daughter, smiling.

Fragile X-Associated Tremor/Ataxia Syndrome

An Overview for Families and Providers

General information, statistics, onset, progression, diagnosis, and interventions and treatments for FXTAS, an adult onset neurological condition, seen in males and females, but more common and more severe in some male premutation carriers.

Woman with a young boy in her lap, wearing matching X logo t-shirts, and smiling

Fragile X-Associated Primary Ovarian Insufficiency

An Overview for Families and Providers

Statistics, risk, diagnosis, and treatments and interventions for FXPOI, a condition affecting ovarian function that can lead to infertility and early menopause in some female premutation carriers.

Young girl in blue graduation gown

Adult Transitions

Transitioning to Adult Services

A review of IDEA and a list of issues to address as those with Fragile X syndrome transition from adolescence to adulthood, including registering to vote, Medicaid, and SSI.

boy walking his bike down a tree-lined street

Adult Transportation

Easing Into New Experiences

Here we cover various transportation options for your adult child with Fragile X syndrome, and some tips on easing them into new experiences.

Zach and his mom standing in front of the Monterey Zoo entrance gate

Adult Daily Activities

Volunteering, Day Programs & Employment

When looking into life after high school for your young adult, it’s important to include regular daily activities in place of school, whether it’s working at a paying job, volunteering with a local organization, participating in a day program, or attending post-secondary education.

Siblings, a young girl and teenage boy

Adult Housing

Transitioning to Outside Services

This is life changing for everyone involved, and preparation is key!

learn more about all these topics

Fragile X Syndrome | FXS
Learn more about Fragile X syndrome prevalence, signs and symptoms in males vs. females, testing, and treatment and intervention.

Fragile X–Associated Tremor/Ataxia Syndrome | FXTAS
Learn more about FXTAS, including prevalence, signs and symptoms (including major, minor, most common), testing, treatment and intervention, how FXTAS relates to Fragile X syndrome, plus other valuable resources.

Fragile X-Associated Primary Ovarian Insufficiency | FXPOI
Learn more about FXPOI, including prevalence, signs and symptoms, testing, treatment and intervention.

Fragile X Syndrome Testing & Diagnosis
Information about who should be tested, lab tests, testing cost and reporting time, and other tests for children with developmental delays.

Reproductive Options
There are a number of ways to build a family for carriers, including prenatal diagnosis, preimplantation genetic diagnosis, egg donors, adoption, or conceiving naturally without any testing.

The Unique Challenges for Females with Fragile X Syndrome
The more we learn, the more effective our interventions and support structures become in assisting them to live personally fulfilling lives.

Consensus Documents on Treatments and Interventions for Fragile X
Treatment guidelines for Fragile X disorders, including behavioral issues, transitioning to adulthood, school and education, financial resources, FXTAS, FXPOI, and more.

What Defines a Carrier?
Why is there so much variability among male and female Fragile X carriers? There are a number of factors involved. Because the Fragile X gene is X-linked, gender plays a big role in determining who might show symptoms.