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How You Can Stand Up to Fragile X

By |2018-12-10T21:00:41-05:00Dec 10, 2018|Foundation|

When people ask me, What do you do? I tell them I help people living with a rare genetic disorder live their best lives – every day. After a pause, their response is often something along the lines of, Wow… that sounds really meaningful! I nod my head ...

Communications is the Key to Effective Advocacy

By |2017-02-24T12:02:22-05:00Feb 24, 2017|Advocacy, Foundation|

I am thrilled to be the newest member of the National Fragile X Foundation family. I have been impressed with the Foundation’s work for several years now, as my friends and former colleagues are active members. You, the FX community, possess the key to positive change in people’s lives and in Washington – energy and passion.

So Much Happened in 2016 Thanks to You!

By |2017-01-04T15:45:17-05:00Jan 4, 2017|Foundation|

As we begin the new year, we want to take a moment to thank you for your incredible support in 2016! Because of you, we continued our mission to help all families living with Fragile X. Last year, we accomplished more than we could ever list in a single article so we want to share just a few highlights that happened around the nation because of you!

21st Century Cures Act Demonstrates Bi-Partisan Spirit

By |2016-12-09T09:24:01-05:00Dec 9, 2016|Annoucements, Foundation|

Closely following its passage (392-26 on Nov. 30) in the House of Representatives, the U.S. Senate took up the 21st Century Cures Act and enacted the law by an equally impressive margin (94-5) vote. The law’s next stop is President Obama’s desk, and the President has already made clear his support for the bill and his intent to sign it. Passage will mean nearly $5 billion of new funding for the National Institutes of Health (NIH) and $500 million for the Food and Drug Administration (FDA), along with a plethora of policy provisions that will bolster medical research.

FAQ with New NFXF CEO Tony Ferlenda

By |2014-08-19T09:01:45-04:00Aug 19, 2014|Foundation|

What would you like people to know about you? I've been in nonprofit leadership roles for the last 23 years — as both a volunteer, board member, and employee. Small- to mid-sized organizations with a compelling, human services mission, like the NFXF...

Grateful Thoughts

By |2013-12-13T11:58:42-05:00Dec 13, 2013|Foundation|

As this year rushes to a close, I want to take a moment to tell you how grateful I am to be a part of the Fragile X community. I’ve learned so much from each of you – your determination, your commitment and your passion to make the lives of your families the best they can be is my daily inspiration....

We're Thankful… For You!

By |2013-11-27T11:14:00-05:00Nov 27, 2013|Foundation|

This Thanksgiving we want you to know that we are extraordinarily grateful to you for making our work possible. Thank you! We'd love to see your posts on "thankfulness" on our Facebook page!

Fragile X Infographic

By |2013-07-22T05:45:02-04:00Jul 22, 2013|Foundation|

We've put together a special infographic that you can share with your friends to in turn share with their friends and family. It shows the many ways Fragile X can affect impact a family. We hope it helps you continue to spread awareness!

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