Posted at January 11, 2013 | By: | Categories: 2013 | 1 Comment

Are You Ready to Take Action?

Action is the foundational key to all success.
–Pablo Picasso

Do you want to know who you are? Don’t ask. Act! Action will delineate and define you.
–Thomas Jefferson

There are risks and costs to action. But they are far less than the long range risks of comfortable inaction.
–John F. Kennedy

Action is character.
–F. Scott Fitzgerald

Action is the antidote to despair.
–Joan Baez

Are you ready to take action? Will you join us on March 5 and 6 in Washington, DC? This is a remarkable time in the Fragile X world. Effective treatments potentially capable of reversing many of the core components of FXS are within sight. The protein produced by the FMR1 gene appears to be inextricably linked to autism. Yet Congress seems unable to act. The result could be drastic cuts in programs that fund medical research. We cannot allow this to happen. The time for you to act is now. Don’t assume that others will do this for you. Assume personal responsibility for assuring that funding for Fragile X research continues and grows.

Register for NFXF Advocacy Day today!

NFXF Advocacy Day (#NFXFAD) is an annual event sponsored and organized by the National Fragile X Foundation. It takes place in late February to early March each year when Congress is considering the federal budget for the following year. Parents and family members impacted by Fragile 

X-associated Disorders are encouraged to take part in this powerful experience that provides a unique opportunity to let your voices be heard in Washington, DC. We urge you to join us in our legislative advocacy effort. Rest assured that your voices, individually and collectively, will be heard loud and clear in the halls of Congress.

A special message from Congressman Harper:


  • Advocacy Day is an important day because it gives people like me who have Fragile x to speak to elected officials to talk about getting funding for Fragile X. i discovered I had fragile x a couple of years ago, and with support from my family, I’m able to deal with it with a positive attitude. Families should know that just because their child is different doesn’t mean that they can’t do different things. They can get jobs, and live independently and have good social lives. For anybody wanting to reach their goals, I say the sky’s the limit! REACH FOR IT AND GRAB IT!

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