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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.

Premutation Conference Brings Together World’s Leading Experts

By |2019-10-25T11:04:21-04:00Oct 25, 2019|Carriers, Research|

The 4th annual Fragile X premutation conference was held in the Netherlands in September. Entitled the Fourth International Conference of FMR1 Premutation: Basic Mechanisms, Clinical Involvement and Therapy, it was a gathering of researchers from around the globe to share their current research on Fragile X premutation disorders and think about what is next. The NFXF supported the conference.

Estate Planning: Special Needs Planning for Individuals and Caregivers

By |2020-05-02T16:22:12-04:00Oct 18, 2019|Financial Planning, Webinar|

In this webinar, learn how to leave money and other assets for the benefit of a child with special needs without causing the child to lose important public benefits, including understanding the difference between a payback special needs trust and a third-party discretionary trust. ABLE accounts and benefits, such as SSI and Medicaid, are also discussed.

What a successful year for NFXF Advocates

By |2019-11-15T10:57:57-05:00Oct 11, 2019|Advocacy|

NFXF Advocates have had a very successful year! Our advocacy efforts focus on ensuring substantial federal investments in Fragile X research, policies that create opportunities for those living with Fragile X to have the best possible life, and an awareness in Congress of Fragile X. Here are some highlights of our efforts this year.

What is Early Check?

By |2019-09-13T16:22:13-04:00Sep 13, 2019|Blog, Research|

Early Check is a unique voluntary research study that screens newborns for Fragile X syndrome and the premutation and Spinal Muscular Atrophy free of charge. It gathers important information and hopes to show the benefits of early testing and treatment and improve newborn screening (NBS) across the United States.

Faces of Fragile X: Brian

By |2019-08-13T16:13:12-04:00Aug 13, 2019|Faces of Fragile X|

Brian loves to be outside. He loves sports. He is on two baseball teams and a basketball team. He loves to bowl. He loves spending time with his friends. He is always helping and looking out for his friends and family. He struggles with managing his behaviors. Sometimes it is all people notice, which is sad because he is so much more.

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