dan@fragilex.org

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About Dan Whiting

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So far Dan Whiting has created 49 blog entries.

Surviving Changes in Washington

As I watched the new U.S. House of Representatives be sworn in today and elect Rep. Nancy Pelosi as its new Speaker, I was reminded, again, that we are fortunate to live in a country where we can change control in Washington in the voting booth, not with tanks in the street. And when change happens, it is peaceful outside the Capital and collegial inside.

By | 2019-01-03T17:53:44+00:00 Jan 3, 2019|Advocacy|Comments Off on Surviving Changes in Washington

Kara and Steve Frech are Standing Up to Fragile X

Kara and Steve Frech received the diagnosis that both of their sons inherited Fragile X Syndrome in 2006. Kara and her mother attended their first NFXF International Fragile X Conference in St. Louis, MO. Filled with information, Kara integrated and applied that knowledge into successful strategies for each of her sons. The National Fragile X Foundation has continued to provide the most up to date information and education to help with daily living.

By | 2018-12-27T09:53:24+00:00 Dec 27, 2018|Community|Comments Off on Kara and Steve Frech are Standing Up to Fragile X

Best Practices in Fragile X Syndrome Treatment Development

A peer-reviewed paper has just been published that discusses a variety of recommendations at the level of preclinical development, the transition from preclinical to human projects, family involvement, and multi-site trial planning. The recommendations are made with the vision that effective new treatment will lie at the intersection of innovation, rigorous and reproducible research, and stakeholder involvement.

By | 2018-12-17T18:11:01+00:00 Dec 17, 2018|Research|Comments Off on Best Practices in Fragile X Syndrome Treatment Development

Steve and Shirley Kaufman are determined to Stand Up to Fragile X

Steve was diagnosed with FXTAS 8 years ago, and since then, he and his family have provided significant financial support to FXTAS programming at the NFXF. They are supporting our goal to build a worldwide consortium of FXTAS clinics to help improve the rate of diagnosis and the delivery of current treatments. This will also set us up to be ready to conduct future clinical trials for new treatments.

By | 2018-12-12T11:05:23+00:00 Dec 12, 2018|FXTAS, Hope & Inspiration|Comments Off on Steve and Shirley Kaufman are determined to Stand Up to Fragile X

How to Advocate for Fragile X Families

NFXF Advocates spend time advocating with Congress for Fragile X priorities we can all get behind and have a tremendous success record: Approximately $350/million per year in research. This wouldn’t get the attention it [...]

By | 2018-12-04T16:16:20+00:00 Nov 30, 2018|Advocacy, Advocacy Day|Comments Off on How to Advocate for Fragile X Families

Autism Spectrum Disorder in Fragile X Syndrome

Autism spectrum disorder and Fragile X syndrome are often linked. Numerous small and parent reported studies have shown that a considerable percentage of individuals with Fragile X syndrome also carry a diagnosis of autism [...]

By | 2018-11-20T15:53:10+00:00 Nov 20, 2018|Uncategorized|Comments Off on Autism Spectrum Disorder in Fragile X Syndrome

Survey: Women with Fragile X Syndrome

Fragile X syndrome is the most common cause of inherited intellectual disability. The clinical variability of this syndrome is wide, particularly in females who initially were thought to be unaffected or carriers. Females have random [...]

By | 2018-11-02T12:03:54+00:00 Oct 26, 2018|Opportunities for families|Comments Off on Survey: Women with Fragile X Syndrome

FX-O-Lantern 2018

The Second Annual Fragile X Pumpkin Carving Contest is here! The mission is to raise awareness of Fragile X by carving the NFXF X into a pumpkin and displaying it, along with an awareness [...]

By | 2018-10-23T15:20:28+00:00 Oct 23, 2018|Awareness Day, Community|Comments Off on FX-O-Lantern 2018

FXTAS Clinic Directory Now Available

Looking for a FXTAS clinic? A directory of clinics around the world is now available here.  All of the clinics are part of the International FXTAS Consortium (IFC). The IFC was co-founded in 2017 by [...]

By | 2018-10-22T10:36:18+00:00 Oct 16, 2018|FXTAS|Comments Off on FXTAS Clinic Directory Now Available

X Strides Heartland Walk/Run 2018 Fundraiser Delivers Awareness and Fun in Support of Fragile X Families

Over 140 runners, walkers, and volunteers converged at the beautiful Briarwood Golf Club on Saturday, September 29, 2018, for the first annual X Strides Heartland event, organized by Nancy Carlson and Jeff Sexton.  The [...]

By | 2018-11-19T14:50:34+00:00 Oct 16, 2018|Heartland Events|Comments Off on X Strides Heartland Walk/Run 2018 Fundraiser Delivers Awareness and Fun in Support of Fragile X Families
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