Fragile X Awareness

Countdown to Fragile X Awareness Month 2022
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   2022 FRAGILE X AWARENESS DAY: Friday, July 22, 2022
   2022 FRAGILE X AWARENESS MONTH: July 2022

Working alone, we couldn’t do all that we do, but working together we amplify our impact. We educate, research, advocate, support, and more.

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! And that doesn’t include all of the posters, t-shirts, media stories, your social media and 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 answer:

  • 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!

2021 Awareness Day

This year marks the 21st year of celebrating Fragile X Awareness every July in the U.S. , which began when Congress designated July 22, 2000, as National Fragile X Awareness Day.

Over the years, the reach of our awareness messages has grown exponentially as our community has expanded and parent groups around the world joined in their own efforts to raise awareness of Fragile X. This year is going to be even bigger and better!

We have long delivered awareness messages and programs the entire month of July, and we are once again looking forward to the Fragile X community rallying together to share about what Fragile X syndrome is, the challenges and joys, the value of saying hi to those who aren’t “typical,” and more.

We have exciting opportunities for you to join in on:

  • Someone Xtraordinary Lives Here signYard Signs: We’ve produced a selection of “July is Fragile X Awareness Month” yard signs that you can order online, and look amazing when you pair them with new green lighting, simply change out your porch or landscape lighting, or add some string lights.
  • Xtraordinary Self-Advocates: Submit your own Xtraordinary person in your life, or post your own and share with us. This year we’re also sharing about individuals with Fragile X syndrome who are working — paid, volunteer, full-time, part-time, and more.
  • Fragile X Facts: Sharing videos and facts each day on social media for you to share (each year these are seen more than 1 million times during the month — let’s go for 2 million!). Check out our social media accounts: Facebook, Instagram, Twitter, and Linkedin.
  • Virtual X Strides: Our virtual X Strides run/walk takes place all of July with a closing ceremony July 31. You can participate no matter where you live in the world because Fragile X knows no boundaries.
  • Awareness Downloads: Below you’ll find Fragile X Awareness Zoom Virtual Backgrounds (including instructions on how to use them) and a variety of Awareness Cards, including multiple versions for different family members.
Xtraordinary people in the lives of those with Fragile X
Do you want to help raise awareness of Fragile X? Let us know!
World Fragile Day

World Fragile X Day

In addition to our initiatives, we are partners in FRAXA’s first World Fragile X Day initiative to join efforts around the globe on July 22, 2021, because Together, We’re Stronger. Learn more.

Fragile X 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 is 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: Our printable Fragile X awareness cards!

Our new designs have a few simple facts describing Fragile X:

  • It is a genetic condition that can cause delays in the areas of learning, language and social skills. It can also cause autism.
  • When my family member becomes overly excited or anxious you may hear speech or see behaviors that are unusual.
  • Most children with FXS look the same and enjoy the same things as other children.
  • We have multiple versions for different family members, with the same descriptive language.

In addition, we have an “Emergency card” template which you or your child can carry around should they find themselves in trouble. In addition to explaining Fragile X syndrome, it also has space for you to fill out emergency contact info and medication/allergy concerns. Our downloadable awareness cards pack has a version you can write in the information or select our Canva template to adjust the text and either download and print or order them to be printed by Canva.

To print any of our cards, we recommend going to your local print store or using websites like Avery.com. All you have to do is upload the images and they will add it to the template of your choice (we recommend template 8871 but others might fit too). Go here to get started on Avery.com.

Get all the Awareness Cards!

Download the full set here. The cards are in a .zip file.

Click the image below for a customizable emergency card template in Canva.

man holding fragile x awareness card with customize written above

Fragile X Awareness Zoom Virtual Backgrounds

The proliferation of video meetings offers a unique opportunity to raise Fragile X awareness. By using a custom virtual background, you can share on each and every meeting. It will prompt people to ask about it, and, even if they don’t, they will be aware of it.

Click an image below to download the individual background and follow the instructions to add it 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.

If you would like a Zip file of all of the backgrounds, enter your name and email below.

Frank Perez and his children

Xtraordinary Individuals

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

If you have someone to recognize as Xtraordinary, you can do that here.