Together, We’re Stronger!
That is our rallying cry and our reality. 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 is especially evident. Our voices, combined, amplify our messages far and wide. For the past two Awareness Months, 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 own 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. It is still doctors, therapists, special educators, teachers, family members, researchers, and more. It is our job to answer, This is Fragile X.
Here is how the NFXF answers the question, What is Fragile X?
- Educating doctors about Fragile X syndrome, FXPOI, FXTAS, and other premutation carrier issues.
- Explaining to newly diagnosed families information about Fragile X and what the future holds.
- Bringing Fragile X families into the community network of support and education at the NFXF.
- Encouraging researchers to research Fragile X.
- Motivating families to participate in Fragile X studies and trials.
- Advocating to Congress for research funding and policies that create better tomorrows.
- Making therapists and educators aware of the treatments and interventions available now.
- Telling extended family members what a diagnosis means.
- And, of course, telling 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!
Here are some of the things you can look forward to from us and ways you can be involved:
- Share daily facts and tips about Fragile X on your social media channels. We will post one every morning on the social networks. Some will be timeless; some will be new. Share them each day. If you are a veteran and think, I shared this the last three years, remember this: you have to tell someone something at least three times before they remember it; one year is a long time in the social media world; we have 3,000 new families at the NFXF just since last July; and your network has new friends and contacts too.
- Share our new Faces of Fragile X stories. We will post them about every other day. Share these too so people can see that if you have met someone with Fragile X, you have met one person with Fragile X. Everyone is unique, different, and special in their own way.
- Share your own original stories and keep it real. Don’t be tempted by the social media filter – share why you love someone with Fragile X, your struggles, and your joys.
- Read our posts throughout the month on what we have been doing to raise awareness, such as a targeted effort to tell neurologists about FXTAS. Check them out.
- Keep an eye out for the launch of a new research effort and consider participating in a clinical trial or study.
- Sign-up to advocate with your members of Congress when they are home during the August recess (deadline is July 3).
- Request your free awareness packet. Print out the posters, wear the bracelets, and pass out the cards.
- Host a lemonade stand, cook-out, tea party, etc. to share with neighbors about Fragile X. You really can do Anything for Fragile X.
- Create a Facebook fundraiser. It not only raises support for the work we do, it is a natural way to make others aware of Fragile X.
- Donate to support the work of the NFXF year-round.
We have a fun month planned! Keep an eye on your email and social media so we can tell everyone, This is Fragile X!