Fragile X Awareness Month

So what is Fragile X awareness? During National Fragile X Awareness Month it’s especially evident. You and our combined voices amplify the message far and wide. For the past few years during Awareness Month, our and your Facebook posts 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 … 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. You still hear it from doctors, therapists, special educators, teachers, family members, researchers, and more. Raising awareness means continuing 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 — For 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.
• Educate therapists and educators — About 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!

Working alone, we couldn’t do all that we do for awareness, but by working together, we amplify our impact.

Every summer around July Fragile X Awareness Month, we all work together to organize X Strides events across the country. X Strides means moving forward — walking, running, strolling, rollerskating, whatever your favorite way to stride is — to raise awareness and funds.

Subscribe to our newsletter for news about upcoming X Strides, and visit our dedicated X Strides page any time.

Explaining Fragile X syndrome or Fragile X-associated tremor/ataxia syndrome can be difficult to broach, so we’re here with a quick way to introduce it with printable awareness cards.

Each card includes a QR code that directs users to the NFXF website for more information. The FXS set also includes an emergency card to use with strangers or other healthcare or law personnel.

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

There are a variety of backgrounds for when you’re virtually working in the office, at home, or on the beach!

Fill out our short form, and we’ll email you a link to a zip file containing all of the files. The email also includes links to instructions on how to add the backgrounds for Zoom or Teams.