dan@fragilex.org

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So far Dan Whiting has created 99 blog entries.

Faces of Fragile X: Bryan

Meet Bryan. He has Fragile X syndrome. His sister says, he has interests and needs similar to everyone else. We like to tease each other, go to sporting events, and go swimming.

By | 2019-11-15T16:33:19+00:00 Nov 15, 2019|Faces of Fragile X|Comments Off on Faces of Fragile X: Bryan

Postdoctoral Training Program in Intellectual and Developmental Disabilities Research Position Openings

The Waisman Center at the University of Wisconsin-Madison is recruiting postdoctoral trainees. The Waisman Center hosts a Fragile X clinic and conducts research on Fragile X-related disorders, such as this recently published research on other premutation carrier issues.

By | 2019-11-15T10:15:06+00:00 Nov 15, 2019|Blog, Research|Comments Off on Postdoctoral Training Program in Intellectual and Developmental Disabilities Research Position Openings

Premutation Conference Brings Together World’s Leading Experts

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.

By | 2019-10-25T11:04:21+00:00 Oct 25, 2019|Carriers, Research|Comments Off on Premutation Conference Brings Together World’s Leading Experts

Estate Planning: Special Needs Planning for Individuals and Caregivers

In this webinar, we learned how to leave money and other assets for the benefit of a child with special needs without causing the child to lose important public benefitsl, 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,  were also discussed.

By | 2019-11-05T09:05:15+00:00 Oct 18, 2019|Financial Planning, Webinar|Comments Off on Estate Planning: Special Needs Planning for Individuals and Caregivers

What a successful year for NFXF Advocates

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.

By | 2019-11-15T10:57:57+00:00 Oct 11, 2019|Advocacy|Comments Off on What a successful year for NFXF Advocates

X Strides Heartland – Another Success

Over 145 Fragile X families, friends, and supporters joined together for the 2nd Annual X Strides Heartland in Iowa. Funds were raised, families were connected, and awareness of Fragile X was raised.

By | 2019-10-09T16:59:26+00:00 Oct 9, 2019|X Strides|Comments Off on X Strides Heartland – Another Success

Faces of Fragile X: Aaron

I tell people Aaron is not just my son, he's my universe! He is 40 years old. He was one of the first to be diagnosed. He has had many therapies that have ultimately helped him. He is funny and bright in so many ways.

By | 2019-09-13T16:52:02+00:00 Sep 13, 2019|Faces of Fragile X|Comments Off on Faces of Fragile X: Aaron

What is Early Check?

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.

By | 2019-09-13T16:22:13+00:00 Sep 13, 2019|Blog, Research|Comments Off on What is Early Check?

Faces of Fragile X: Brian

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.

By | 2019-08-13T16:13:12+00:00 Aug 13, 2019|Faces of Fragile X|Comments Off on Faces of Fragile X: Brian

Faces of Fragile X: Avi

Meet Avi. He has Fragile X syndrome, and his mom tells us what she loves about him, what she wants others to know, her advice for newly diagnosed families, and more. It is a peek into just one Fragile X family - but worth your time.

By | 2019-08-02T10:38:46+00:00 Aug 2, 2019|Faces of Fragile X|Comments Off on Faces of Fragile X: Avi
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