Posted at April 9, 2013 | By: | Categories: 2013,Call for Action | 18 Comments

Let Congress Know We Want Fragile X Research!

It’s Advocacy Time Again—Fragile X Needs Your Help Today!

As you all know, nearly 200 Fragile X advocates gathered in Washington, DC on March 6 to brave the snow storm that wasn’t and then hand-carry our message to support FX research right into the halls of Congress. Typically the “Dear Colleague” and “Letter-to-Appropriators” we want our Members of Congress to sign would have been circulating before now…but nothing is typical in DC these days.

That means the letter is circulating only NOW and TODAY is the day to write to your MOC and ask him or her to join with our other champions in a letter to the Appropriations Committee.

You can access the template by following the links below to call or write today. All you have to do is fill in your personal information and a brief personal statement, and your emails will be delivered for you. In past years NFXF advocates have sent in between 4,000-5,000 emails and letters, so we need everyone’s participation to at least match that and more! You can help accomplish that by forwarding this letter to friends and family in your address books.

Please do it now if you can, while you’re thinking about it! Many thanks for helping all of us in the Fragile X community keep the hope alive!


  • I have 3 children and a brother with Fragile X, it is time to have some research done on this.

  • Fragile X is a a genetic form of autism – autism is at a very high diagnosis rate and is being linked to genetic origins. Researching Fragile X further will not only help those families affected by Fragile X, but those millions affected by autism as well. Please continue research at all levels so that we may find a cure! thank you

  • My 2 year old son and 1 year old nephew are both affected by full mutation. We need research to give our children an early advantage.

  • Please make this a mandatory test at birth and please support research!

  • we need reseach on fragile x. What if it were your child?

  • Please support research!

  • So common, yet “no one” has heard of it, including some special education teachers, therapists, and tutors that we have come across while seeking answers for our son! That has to change.

  • We have two beautiful young ladies in our family who have been diagnosed with Fragile X syndrome. Please support this research so that a cure can found. I will repeat a comment from below…what if it was your child or grandchild who was affected, THEN things would speed up.

  • Fragile X has affected my life by the students I’ve taught. This might be rare, but it is worth researching and finding cures or preventions!

  • As a mother of three children with Fragile X I know too well just how debilitating Fragile X can be. With recent advances in genetics and neurology we are getting close to major breakthroughs that could not only bring hope to those with Fragile X, but also autism and even Alzheimer’s. Please keep up the great momentum and say yes to a cure today! Thanks.

  • Please fund research to help people affected by this disease.

  • We need the research.

  • Please we need support , our kids need your help !

  • I have five children who are affected with fragile x . God bless all those who are affected with us. May He bring peace and understanding to all who are affected. Please help us find a cure. Thank you.

  • I urge you to support Fragile X research.

  • I have a 16 year old son with Fragile X. I urge you to support Fragile X research.

  • I have a 12 year old son with Fragile X. Research is imperative for the future of our kids and those younger kids who are affected.

  • I have a 5 year old grandson with Fragile X. I want a better life for him…one where he can be independent and a contributing member of society. Please fund Fragile X research as it seems to affect so many lives.

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