Yearly Archives: 2013

/2013

Let Your Voice Be Heard!

Registration is now open National Fragile X Advocacy Day is March 4-5, 2014. Let your voice be heard in the halls of Congress. Online Registration   Full details can be found online at fxadvocacy.fragilex.org. We hope [...]

By | 2013-12-23T07:41:58+00:00 Dec 23, 2013|2014|Comments Off on Let Your Voice Be Heard!

MIND Institute Study on Men with FX Premutation

We are searching for men who are carriers of the Fragile X premutation between the ages of 40 and 69 to participate in a longitudinal UC Davis research project, studying changes in brain and cognition associated with aging. For men who have not yet been tested, FMR1 DNA testing is completed to help determine eligibility for the study.

By | 2013-12-17T06:51:50+00:00 Dec 17, 2013|Opportunities for families|Comments Off on MIND Institute Study on Men with FX Premutation

Grateful Thoughts

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....

By | 2013-12-13T11:58:42+00:00 Dec 13, 2013|Foundation|Comments Off on Grateful Thoughts

Charity Navigator Awards NFXF With a 4-Star Rating

We are proud to announce that Charity Navigator has awarded us the prestigious rating of 4 Stars. That's the highest possible rating from America's Largest Charity Evaluator. The goal of the Charity Navigator is to [...]

By | 2013-12-04T11:39:38+00:00 Dec 4, 2013|Uncategorized|Comments Off on Charity Navigator Awards NFXF With a 4-Star Rating

We're Thankful… For You!

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!

By | 2013-11-27T11:14:00+00:00 Nov 27, 2013|Foundation|Comments Off on We're Thankful… For You!

Fragile X and the NFXF, Courtesy of the Giving Library

I'm very excited to share this short video I recorded recently thanks to the generosity of our friends at the Giving Library. In it, I talk about how Fragile X affects our lives and the ways the National Fragile X Foundation has helped make a world of difference to many families, including mine. I hope you'll take the time to watch it and share it with your family and friends.

By | 2013-11-26T09:00:09+00:00 Nov 26, 2013|Keeping You Informed|Comments Off on Fragile X and the NFXF, Courtesy of the Giving Library

Flapjack Fundraisers, Bowling for X's and more!

Have you ever wished you could organize a fundraiser, but thought the the work would be more than you could handle? So did Marie Horowitz and Janet Armetta until they found a partner in Applebee’s Restaurants. Applebee’s Flapjack Fundraiser program.....

By | 2013-11-20T13:07:04+00:00 Nov 20, 2013|Fundraiser|Comments Off on Flapjack Fundraisers, Bowling for X's and more!

When “Marriage” Is Spelled F-X-T-A-S

My whole marriage to my husband Vince can be described by one acronym: FXTAS. Our wedding was in April 1999. It was a second marriage for us both, and we weren’t youngsters (I was 48 and Vince was 64), but I thought we were both healthy. We had no inkling that Vince’s mind was already deteriorating from FXTAS.

By | 2013-11-20T10:32:30+00:00 Nov 20, 2013|FXTAS, Hope & Inspiration|Comments Off on When “Marriage” Is Spelled F-X-T-A-S

Massachusetts Ends Sheltered Workshops, Sets Promising Model

Blueprint for Success sets the new mission statement for Massachusetts' Employment for Individuals with Disabilities As part of the Collaboration to Promote Self-Determination, one of the issues that we at the NFXF have [...]

By | 2013-11-13T12:22:31+00:00 Nov 13, 2013|Advocacy|Comments Off on Massachusetts Ends Sheltered Workshops, Sets Promising Model

UNC Child Neurologist Finds Potential Route to Better Treatments for Fragile X, Autism

Contact: Mark Derewicz mark.derewicz@unch.unc.edu (919) 923-0959 University of North Carolina Health Care CHAPEL HILL, N.C. – When you experience something, neurons in the brain send chemical signals called neurotransmitters across synapses to receptors on other [...]

By | 2013-11-13T12:04:30+00:00 Nov 13, 2013|News Reports and Commentaries|Comments Off on UNC Child Neurologist Finds Potential Route to Better Treatments for Fragile X, Autism

LINKS Leaders Gather in St. Louis

Individual commitment to a group effort—that is what makes a team work, a company work, a civilization work. The backs of sixty-three T-shirts bore this quote at the NFXF LINKS Leadership Summit in [...]

By | 2017-09-05T16:49:20+00:00 Nov 6, 2013|Community Support Network|Comments Off on LINKS Leaders Gather in St. Louis
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