The 1990’s and the NFXF Becoming a True National Organization

By |2024-04-08T16:11:08-04:00Mar 19, 2024|Foundation|

Thankfully, we’ve come a long way since the day when FXS was jokingly referred to as “Fragile WHATSyndrome?!” In the 1990’s, many changes were taking place as a result of the increased scientific study of Fragile X and how the growing body of knowledge was impacting the work of the Foundation. 

The National Fragile X Foundation — The Early Years: 1984–1990s

By |2024-04-08T12:49:20-04:00Feb 20, 2024|Foundation|

The focus in the early years of the NFXF was to “get the word out!” During that time period, the inherited nature of Fragile X was not fully understood. However, early pioneers in the Fragile X world, such as Dr. Stephanie Sherman and Dr. Ted Brown, were steadily making progress in sorting out the genetics.

The National Fragile X Foundation — 1984: The Beginning

By |2024-01-24T12:55:57-05:00Jan 24, 2024|Foundation|

At the beginning of the 1980s, a young developmental pediatrician, Dr. Randi Hagerman, was building a career at Children’s Hospital Colorado. Her curiosity led her to some of the early papers on X-linked intellectual disabilities (in particular, those of Dr. Gillian Turner from Australia) and descriptions of what was still often referred to as Martin-Bell Syndrome.

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....

Honor Robby Miller with Your Thoughts

By |2013-10-12T16:08:33-04:00Oct 12, 2013|Foundation|

The NFXF Board of Directors accepted the resignation of Robby Miller at its regular board meeting in Detroit on October 12, 2013. Miller will continue to work at the Foundation through December 31, 2013. Have [...]

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