dan@fragilex.org

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About Dan Whiting

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So far Dan Whiting has created 58 blog entries.

Sign-Up for In-District Congressional Meetings

Advocating for Fragile X families when members of Congress and their staff are in their home districts is key for three reasons: 1) You don't have to travel; 2) You generally have more time with them; 3) You underscore this is important to their constituents

By | 2019-05-15T16:28:04+00:00 May 15, 2019|Advocacy|Comments Off on Sign-Up for In-District Congressional Meetings

Fiscal Year 2020 NICHD Funding Letter

We work closely with several groups to help on common public policy and funding goals. These partnerships are key to our impact and an important leg in our advocacy stool. Like we say, Together, We're Stronger. One of these key partnerships is the Friends of the NICHD. The NICHD is the National Institute for Child Health and Human Development. It is one of the institutes at the National Institutes of Health (NIH) and funds most of the Fragile X research at NIH. The Friends work together to support, overall, the funding level for NICHD, which flows down to each of the research areas, including Fragile X.

By | 2019-04-30T14:18:37+00:00 Apr 30, 2019|Advocacy, Research|Comments Off on Fiscal Year 2020 NICHD Funding Letter

Help Grow the Special Olympics

Even if you have never been to a Special Olympics event, you know the positive impact it has on the lives of the athletes and their loved ones. It is indescribable and hard to put into words that do it justice. You just know. It is because of this positive impact on not only those who have participated, but those who will, that we work to support and grow the Special Olympics.

By | 2019-03-29T12:21:39+00:00 Mar 27, 2019|Advocacy|Comments Off on Help Grow the Special Olympics

Research Study on Language and Brain Imaging

The Waisman Center at the University of Wisconsin-Madison is recruiting boys with fragile X syndrome and autism spectrum disorder for a study on language and communication skills and Magnetic Resonance Imaging (MRI). The purpose of this research is to better understand how children with fragile X and children with ASD use language. All of the testing is done at the Waisman Center, and can be scheduled at your convenience. 

By | 2019-03-11T14:23:13+00:00 Mar 11, 2019|Opportunities for families, Uncategorized|Comments Off on Research Study on Language and Brain Imaging

Open Post-Doctoral Position in FMR1-related and ASD Research

The Waisman Center at the University of Wisconsin-Madison has an open position in the Post-Doctoral Training Program in Intellectual and Developmental Disabilities Research. This program has been supported continuously by NICHD since its inception in 1995, and over 95% of former trainees have obtained faculty and/or research positions relevant to IDD. The majority have successfully received extramural research funding.

By | 2019-04-09T15:25:09+00:00 Mar 4, 2019|Research|Comments Off on Open Post-Doctoral Position in FMR1-related and ASD Research

NFXF Advocacy Day – Another Success

Advocacy Day 2019 is done, and by all measures, it was another success. Fragile X advocates visited 56 Senate offices and 61 House offices – all of their home districts. We had fun, connected with [...]

By | 2019-02-28T13:51:49+00:00 Feb 28, 2019|Advocacy|Comments Off on NFXF Advocacy Day – Another Success

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
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