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dan@fragilex.org

Home/Dan Whiting

About Dan Whiting

Dan Whiting, director of community impact, has been a member of the NFXF team since 2017. He has over 20 years of experience in public policy and communications, including time on staff of a U.S. Senator for 11 years, in the Bush administration as chief of staff at an agency, and as a senior strategist for communication initiatives across the U.S. Department of Defense. Dan loves spending time with his family and friends and dreams of either being an artisan woodworker or comedy writer.

The COVID-19 Vaccines and Fragile X

By |2021-04-08T09:50:31-04:00Apr 7, 2021|Blog|

Dr. Craig Erickson held a webinar on the COVID-19 vaccines for individuals living with Fragile X premutations and full mutations. He also covered COVID-19 vaccine safety in general.

Advocacy Day Social Story

By |2021-02-09T16:22:39-05:00Feb 9, 2021|Advocacy|

Our own Jayne Dixon Weber pulled together a social story to use to help you and your self-advocate prepare for the NFXF Advocacy Day on February 24, 2021.

The good stuff from 2020 (no really there is some)

By |2020-12-17T12:54:19-05:00Dec 15, 2020|Blog|

I like to talk about #pandemicPositive – there is plenty that has been hard(er) this year, but we have also seen lots of good. So, I polled my fellow staff members for some examples of the impact we all made this year through your support.

Webinar: Adults in Fragile X Syndrome

By |2021-02-12T13:43:55-05:00Dec 10, 2020|Blog, Webinar|

Dr. Elizabeth Berry-Kravis discusses the value of the FORWARD database for understanding problems that face adults living with Fragile X syndrome. We also talk about how families of adults can contribute to FORWARD and our understanding of adults with FXS by doing a research-only remote visits with a FORWARD clinic to increase the data pool for adults with FXS in FORWARD.

The Launch of the International Fragile X Premutation Registry

By |2020-11-12T15:28:27-05:00Nov 12, 2020|Research|

Now you can explore the International Fragile X Premutation Registry page on the NFXF website. You will find information about the Registry, a Frequently Asked Question section, the pictures and biographies of the Advisory Committee, and the “Enroll Now” button. The “Enroll Now” button will take you to the HIPPA-compliant REDCap database where your information will be stored.

Help Expand Telehealth Options

By |2020-12-07T14:35:54-05:00Nov 10, 2020|Advocacy|

The TREAT Act works to resolve this. The Temporary Reciprocity to Ensure Access to Treatment (TREAT) Act was introduced in the Senate by Senators Roy Blunt (R-MO) and Chris Murphy (D-CT). The legislation provides temporary licensing reciprocity for health care professionals in good standing during COVID-19 and future national emergencies.

NFXF Advocacy in 2021

By |2020-11-05T17:07:56-05:00Nov 5, 2020|Advocacy|

Gregg Harper, Fragile X dad, former member of Congress for Mississippi's 3rd Congressional district, offers a message to all Fragile X families following the 2020 election, looking forward to NFXF advocacy in 2021.

Camping and Fragile X

By |2020-10-30T11:04:21-04:00Oct 30, 2020|Advocacy|

Because of the hard work of NFXF advocates over the past 20 years, decision-makers in Congress know what Fragile X is. Being present, persistent, and problem-solving is what gets things done in Congress.

Sneak Peek at the International Fragile X Premutation Registry

By |2020-10-29T14:13:33-04:00Oct 29, 2020|Blog, Research|

The International Fragile X Premutation Registry will help us learn about the Fragile X premutation and will build community and develop a group of individuals interested in participating in research. Learn more in this video from Dr. David Hessel of the University of California, Davis MIND Institute.

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