About Dan Whiting

Dan served as the NFXF Director of Community Impact from 2017 to 2022. He has over 23 years of experience in public policy and communications, including 11 years as a staff member for a U.S. Senator, in the Bush Administration as Chief of Staff at an agency, and as a senior strategist for communication initiatives across the DOD. During his time at the NFXF, he was passionate about helping individuals with intellectual and developmental disabilities live better lives.

Webinar: Females and Fragile X Syndrome

By |2021-08-19T17:03:04-04:00Jun 9, 2021|Blog, FXS, Webinar|

Dr. Marcia Braden joins us to discuss Females and Fragile X syndrome (FXS). This webinar helps you better understand the features associated with the syndrome. Information processing, cognitive strengths and weakness as well as social issues are identified. Strategies to address common challenges are also discussed.

Fragile X Awareness Signs

By |2021-05-28T15:05:16-04:00May 28, 2021|Awareness Month, Blog|

We designed several Fragile X awareness yard signs so you can choose one that serves you best. Each are printed on-demand and shipped directly to you with everything you need to display them in your yard for all of July or even longer if you choose.

NFXF Webinar Series: Fragile X Syndrome

By |2021-05-18T16:45:55-04:00May 18, 2021|FXS, Webinar|

Dr. Nicole Tartaglia joins us to discuss Fragile X syndrome (FXS). She covers everything from brief descriptions of the Fragile X-associated disorders, such as FXTAS and FXPOI, to details about FXS.

The Genetics of Fragile X Webinar

By |2021-08-09T16:47:08-04:00Apr 29, 2021|Blog, Webinar|

Many thanks to Brenda Finucane, MS, CGC, for her webinar to help each of us understand the genetics of Fragile X. The presentation was held live online Wednesday, April 28, 2021. TYou can access an on-demand stream of it here.

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.

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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