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Fragile X Awareness

Fragile X AwarenessDan Whiting2024-11-01T10:38:27-04:00

Fragile X Awareness

Countdown to National Fragile X Awareness Day — July 22, 2024

National Fragile X Awareness Day — and Month!

2024 FRAGILE X AWARENESS DAY: Monday, July 22, 2024
2024 FRAGILE X AWARENESS MONTH: July 2024

In July 2000 the 106th Congress designated July 22 as National Fragile X Awareness Day. We took that a step further and consider the month of July as Fragile X Awareness Month.

Here you’ll find information on all our awareness day (and month) activities each year in July, plus resources for raising awareness year-round, including:

Printable Fragile X Awareness Cards
Printable FXTAS Awareness Cards
Fragile X Awareness Zoom Virtual Backgrounds
Visit our store for NFXF-branded merchandise
Learn more about X Strides

Working alone, we couldn’t do all that we do for awareness, but by working together we amplify our impact. We educate, research, advocate, support, and more. Keep an eye on our Facebook page for up-to-date news and events.

What is Fragile X Awareness?

During National Fragile X Awareness Month it’s especially evident. Our combined voices amplify our messages far and wide. For the past few years during Awareness Month, our Facebook messages alone are seen one million times. One million times! And that doesn’t include all of the posters, t-shirts, media stories, your social media, blog posts, visitors to our website, talking to neighbors, teachers, doctors, etc. The list — and the impact — go on and on. You should be proud of what you do!

And yet, people still ask, Fragile what? Sadly, that isn’t limited to your average person on the street. We still hear it from doctors, therapists, special educators, teachers, family members, researchers, and more. It is our job to:

Educate doctors about Fragile X syndrome, FXPOI, FXTAS, and other premutation carrier issues.
Help newly diagnosed families with information about Fragile X and what the future holds.
Bring Fragile X families into the community network of support and education at the NFXF.
Encourage researchers to research Fragile X.
Motivate families to participate in Fragile X studies and trials.
Advocate to Congress for research funding and policies that create better tomorrows.
Make therapists and educators aware of the treatments and interventions available now.
Tell extended family members what a diagnosis means.
And, of course, tell friends, neighbors, friends-of-friends, random people on the street, and, well, everyone, about Fragile X and how they, individually, can best support individuals living with it.

We all do this every day, but July is a special month to have a concerted effort!

Printable Fragile X Syndrome Awareness Cards

Have you ever been in a situation where you needed a quick way to explain Fragile X to a stranger or acquaintance? Maybe there’s an incident at the grocery store and some people begin staring. Explaining Fragile X can be a difficult topic to broach, so we’re here with a quick way to introduce it.

We have three Fragile X awareness cards, each is explained below:

1. For the Individual with Fragile X Syndrome

Front

HAVE YOU HEARD OF FRAGILE X?

Includes a QR code that scans to the NFXF website for more information.

Back

I HAVE FRAGILE X SYNDROME
It is an inherited disorder affecting intellectual, behavioral, and social development. It can also cause autism.

In unexpected situations, I can get anxious and confused
It may be difficult for me to answer or follow instructions
You may hear speech or see behaviors that are unusual
I may be sensitive to touch or physical contact

I have Fragile X syndrome awareness card.

2. For Family Members

Front

HAVE YOU HEARD OF FRAGILE X?

Includes a QR code that scans to the NFXF website for more information.

Back

MY FAMILY MEMBER HAS FRAGILE X SYNDROME
It is an inherited disorder affecting intellectual, behavioral, and social development. It can also cause autism.

In unexpected situations, I can get anxious and confused
It may be difficult for me to answer or follow instructions
You may hear speech or see behaviors that are unusual
I may be sensitive to touch or physical contact

My family member has Fragile X syndrome awareness card.

3. Emergency Card for the Individual with Fragile X Syndrome

Customize this card with their name and a contact in case of an emergency.

Front

Hi, my name is: ______________

I have a condition called Fragile X syndrome. I need help. Could you please contact: ______________

Back

FRAGILE X SYNDROME
It is an inherited disorder affecting intellectual, behavioral, and social development. It can also cause autism.

In unexpected situations, I can get anxious and confused
It may be difficult for me to answer or follow instructions
You may hear speech or see behaviors that are unusual
I may be sensitive to touch or physical contact

Emergency card for individual with Fragile X syndrome.

Printable FXTAS Awareness Cards

Explaining Fragile X-associated tremor/ataxia syndrome can be a difficult topic to broach, so we’re here with a quick way to introduce it with a FXTAS awareness card. If someone with FXTAS needs help, we also have emergency cards to use with strangers or other healthcare or law personnel.

1. FXTAS Awareness Card

Front

HAVE YOU HEARD OF FRAGILE X-ASSOCIATED TREMOR/ATAXIA SYNDROME?

Includes a QR code that scans to the NFXF website for more information.

Back

FRAGILE X-ASSOCIATED TREMOR/ATAXIA SYNDROME (FXTAS)
It is an adult-onset neurodegenerative disorder that may develop in individuals with the Fragile X (FMR1) premutation.

Associated with tremors, balance problems, and other neurological signs
Progresses at varying rates in different individuals

I have FXTAS awareness card.

2. FXTAS Emergency Card

Customize this card with their name and a contact in case of an emergency.

Front

HAVE YOU HEARD OF FRAGILE X?

Hi, my name is __________________

I have a condition called Fragile X-associated tremor/ataxia syndrome (FXTAS). I need help. Could you please call: _______________

Back

FRAGILE X-ASSOCIATED TREMOR/ATAXIA SYNDROME (FXTAS)
It is an adult-onset neurodegenerative disorder that may develop in individuals with the Fragile X (FMR1) premutation.

Associated with tremors, balance problems, and other neurological signs
Progresses at varying rates in different individuals

Printable FXTAS emergency cards

Fragile X Awareness Zoom Virtual Backgrounds

Video meetings offer a unique opportunity to raise Fragile X awareness. By using a custom virtual background, you can raise awareness on each and every meeting. It will prompt people to ask about it, and if not, make them aware of it.

View each background image below, and we also have links to instructions for adding backgrounds to Zoom or Teams. Note that two of them are video files that add some subtle motion to the background image. Not all computers support video virtual backgrounds.

You may download the images and movie files individually, or fill out our short form just below the images and we’ll email you a link to a zip file that contains all of the files.

Get All Zoom Backgrounds

Xtraordinary Individuals

We asked to learn more about the Xtraordinary individuals in your lives, and we heard from parents, professionals, friends, co-workers, grandparents, employers, cousins, doctors, and mentors (to name just a few), and more come in every day!

View them all and submit your Xtraordinary someone!