- Fragile X-associated Disorders
- Treatment & Intervention
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The month of July is National Fragile X Awareness Month, an extension of Fragile X Awareness Day (July 22), which is officially recognized by Congress to increase awareness and advocacy for Fragile X.
Fragile X syndrome (FXS) is the most common cause of inherited intellectual disability and the most common known genetic cause of autism. Individuals with FXS can experience developmental delays ranging from mild to severe. To learn more about FXS and other Fragile X-associated Disorders (FXDs) go to: fxd.fragilex.org
The NFXF Let 'Em Know 5k is a National Fragile X Awareness Month event to spread awareness for Fragile X. It is a fun and easy way for individuals to raise funds for Fragile X from anywhere in the world!
Registrants agree to run and/or walk the 5k (3.1 miles) in the name of Fragile X. Participants can walk any time through the month of July. Many “Let ‘Em Knowers” take the opportunity to walk through their local neighborhoods and inform people about Fragile X.
Registrants will receive a custom-designed, dri-fit shirt and NFXF Let ’Em Know 5k race bib.
It’s on the honor system—you do not have to report or verify your miles! But we’d love to hear about your run/walk through social media. Remember, it isn’t about how fast or slow you are. It’s about what you can do to raise awareness for Fragile X and “Let ’Em Know!”
National Fragile X Awareness Month is a group effort. We prepare each July to unite and keep our communities informed about Fragile X, ensuring that one more doctor, one more teacher, one more neighbor knows about our cause and makes life easier for all families living with Fragile X. And we couldn't do it without you! We want to thank you for helping us raise over... » FULL ARTICLE
July 22 is National Fragile X Awareness Day, officially recognized by Congress since 2002. Help spread awareness and understanding for Fragile X by making a donation today. You can even dedicate your donation to a loved one on this special day! Just complete the “I want my donation to be dedicated” box on our donation page. We’d like to thank all of our NFXF Let ‘Em Know participants and donors... » FULL ARTICLE
In our world of parenting a child with special needs, all you have to do is say “Holland” and everyone knows you are dealing with challenging days and lost dreams. As Emily Perl Kingsley expressed in her famous poem, having a child with special needs is like planning a trip to Italy only to land in Holland. There is a new language, new places to visit, and new people to meet. Everything is different, but that does not mean it’s bad. It has taken me a long time... » FULL ARTICLE
Registration & Rules What is the Difference Between Registering, Joining a Team and Donating? Registering When you register for the NFXF Let ‘Em Know 5k, you: Receive a dry-fit shirt and a race bib. Agree to do a 5k (3.1 mile) by walking, running or however else you choose. Create a fundraising page to help raise money for Fragile X awareness. Registering for the Let ‘Em Know does not count toward your fundraising goal. Joining a Team Those who create a fundraiser either by registering or starting a fundraiser have... » FULL ARTICLE
Last year, we held our first ever “Let ‘Em Know 5k”, a virtual event that brought together people from all over the country! This July, we want it to be even bigger and better. So if you were part of last year’s event, come back and let’s aim higher! If you missed last year’s Let ‘Em Know event, we welcome you to see what all the fuss is about! Here’s what you need to know: What is Let ‘Em Know? Let 'Em Know is a event to raise awareness... » FULL ARTICLE
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
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
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... » FULL ARTICLE
As National Fragile X Awareness Month for 2013 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... » FULL ARTICLE
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
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
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... » FULL ARTICLE
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
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