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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.

Webinar: Adults in Fragile X Syndrome

By |2020-12-16T11:57:20-05:00Dec 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.

Survey: How has the COVID-19 Pandemic Impacted Fragile X Families

By |2020-11-13T16:44:42-05:00Nov 9, 2020|Opportunities for Families|

Researchers at Teachers College at Columbia University are conducting a survey to learn about the impact that the COVID-19 pandemic has had on multiple aspects of the lives of people with Fragile X Syndrome. We want to see how the Fragile X community specifically was impacted so that we can have a more focused plan of action for helping these families. The overall goal of this survey is to distribute our findings to medical professionals so that they can see what gaps have been created in their practices from the pandemic. 

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.

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