- Fragile X-associated Disorders
- Treatment & Intervention
- Support the NFXF
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.
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:
With special mention to:
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!
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!
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.”
Today, we recognize our friends and partners in
. . . Read More: European Fragile X Awareness Day
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
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+
. . . Read More: NFXF Let 'Em Know 5K Gallery
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
. . . Read More: Autism Live: Autism and Fragile X Syndrome With Dr. Gary Feldman
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
. . . Read More: The Many Ways You Raise Fragile X Awareness—Every Day!
UPDATE: Just as we were about to publish this article, we were pleased to learn that NFXF Board Member Dave Justus and his wife Joy will match another $10K in Let 'Em Know 5K donations this month! That brings our total matching challenge to $40,000. With your help, we'll reach that goal! So lace up those running shoes, pull on that T-shirt and get going! And be sure to let your network know that every dollar
. . . Read More: Our Top Let 'Em Know Virtual 5K Fundraisers So Far!
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
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.
. . . Read More: How Does This Virtual 5K Fundraiser Actually Work?
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
. . . Read More: NFXF Let 'Em Know 5K
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!
. . . Read More: Everybody's Walking!