Fragile X Awareness Month


Awareness Begins…and just keeps on spreading and spreading…with YOU!

Preparing for National Fragile X Awareness Month in July, we are reminded again of how awareness happens. One person, one fundraising lemonade stand, one parent’s chat with the teacher or family doctor, one email to a congressional representative… One outreach, one commitment after another to Let ‘Em Know! All of it by individuals convinced they can make a difference.

Results – You did it!

Our thanks to everyone who ran, walked, hiked, and biked in the Let ‘Em Know Virtual 5K event and to all of your supporters who so generously donated to your efforts!

Together you helped raise nearly $48,000 (as of 8/9/13) in online contributions ― more than enough to meet our matching challenge grant and making this our most successful National Fragile X Awareness month ever!

Here are just a few of the over 300 participants in this year’s Let ‘Em Know event.

We are pleased to award the special prizes to:

  • Alexis Davis, Maryland – Fundraiser with the most money raised online: $3,305! And 35 donors!
  • Nick Henning, California – Fundraiser with the most number of donations: 41!

With special mention to:

  • Sebastian Duckworth , New Jersey with $1,800 in donations

Congratulations to all!

We would like to add how gratifying it has been to see the enthusiasm, the excitement and the energy with which you embraced this first-time event during awareness month. Thank You for helping to Let ‘Em Know!

Alexis Davis, Maryland

Fundraiser with the most money raised online

Running this Let ‘Em Know 5k was truly a great experience! I was equally thrilled with the fiscal support received and the interest from folks wanting to learn about Fragile X. I had people reach out to me asking questions about FX. We certainly accomplished Raising Awareness of Fragile X!

-- Alexis Davis, Maryland

Nick Henning, California

Fundraiser with the most number of donations

The NFXF Let ‘Em Know 5K Fundraiser was a wonderful idea, and so easy to participate in. The Crowdrise platform was a very effective tool for letting people know and allowing them to contribute or share with others. We had generous and caring friends, family, colleagues and students contributing funds and spreading awareness of Fragile X and associated disorders across 4 different continents. We are very appreciative of their efforts on our behalf, and are even more proud to be members of the worldwide Fragile X community/family.”

-- Nick Henning, California

Latest News

  • Today, we recognize our friends and partners in Europe and around the world for their efforts to expand awareness of Fragile X. This European awareness day, combined with our National Fragile X Awareness Day... » FULL ARTICLE

    Posted on October 10, 2013 | Categories : Awareness Day | 0 Comment
  • Summer may be a time of R&R in the rest of the world, but our devoted Fragile X fundraisers always seem to use the warm months to heat up their engines and put their creative energies into overdrive. Here are some brief reviews on what they were up to. The Mathias Walk for Fragile X – Bernville, PA For the past seven years, Jennifer and Luke... » FULL ARTICLE

    Posted on August 21, 2013 | Categories : 2014,Awareness Day,Fundraising,International Fragile X Conference | 1 Comment
  • As National Fragile X Awareness Month winds down, we want to thank everyone for making our first NFXF Let 'Em Know Virtual 5K a resounding success! With your help getting the word out to friends and family, you joined with us in not only walking and jogging but sprinting past our $40,000 matching challenge grant goal, making this our biggest Awareness Month fundraiser ever! Together, we not only exceeded our fundraising goal, but our 300+ Let 'Em Knowers traversed a collective total of over 1,000 miles! That's 1,000 miles for Fragile X! A special thanks goes to the Blount and Justus... » FULL ARTICLE

    Posted on July 31, 2013 | Categories : Awareness Day | 2 Comments
  • Take a look at this "Autism Live" interview with Dr. Gary Feldman of the Fragile X Clinic at in Long Beach. In the video, Dr. Feldman explains fragile X syndrome and the reasons that people diagnosed with autism should be tested. He also makes some excellent suggestions about where you can go for help with Fragile--including the National Fragile X Foundation, the and our upcoming International Fragile X Conference! Thank you, Dr. Feldman, for recognizing us as a wealth of knowledge... » FULL ARTICLE

    Posted on July 29, 2013 | Categories : Awareness Day,FXCRC and Clinics,Southern California | 1 Comment
  • Every day when you walk out the door with your child who has fragile X syndrome (FXS), you are raising awareness of the condition. It happens in a variety of ways, and what is so interesting is that everyone takes away a little something different when they meet your child. Sure, your focus initially is on dealing with the diagnosis and the day-to-day issues that come at you in its wake, but as you begin to raise awareness, you soon see that FXS is much... » FULL ARTICLE

    Posted on July 24, 2013 | Categories : Awareness Day | 6 Comments
  • ... » FULL ARTICLE

    Posted on July 17, 2013 | Categories : Awareness Day,Fundraiser | 0 Comment
  • One of the most common questions I am asked on Facebook about my posts is, “Can I share that?” It’s typically in reference to something about Fragile X: an article, a blog and most recently a “Fragile X Fact.” My answer is always the same, “Yes! Please do!” Awareness and education is a crucial part of getting the word out beyond our Fragile X world. Without it, there... » FULL ARTICLE

    Posted on July 8, 2013 | Categories : Awareness Day | 33 Comments
  • What is a virtual run/walk? A virtual run/walk is pretty simple. You sign up and we mail you the official T-shirt and race bib. Then you and everyone from everywhere choose your own date, time and place to do your running or walking in the month of July. » FULL ARTICLE

    Posted on June 5, 2013 | Categories : Awareness Day | 6 Comments
  • Virtual Run/Walk for Fragile X Our mission: To raise awareness about Fragile X! We need your help to “Let ’Em Know” and make that happen! This isn’t about how fast or slow you are, instead it’s about what you can do to raise awareness and “Let ’Em Know!” We’ve created what we think is the perfect virtual event and tips for success to help you raise awareness and money for Fragile X from anywhere in the world! What does a virtual run/walk mean? Basically, it means you can complete it anywhere, anytime beginning... » FULL ARTICLE

    Posted on May 24, 2013 | Categories : Awareness Day | 5 Comments
  • We are so grateful for the hard work that so many do to make these walks so successful. Everyone benefits – the NFXF, the individuals and the LINKS groups, the walkers (& runners and hikers) and their fans and the communities that participate – thank you all! » FULL ARTICLE

    Posted on May 15, 2013 | Categories : Awareness Day,Fundraiser | 2 Comments