dan@fragilex.org

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So far Dan Whiting has created 91 blog entries.

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

Faces of Fragile X: Paul

Paul is one of our Faces of Fragile X. His story is all too common for those with Fragile X - his mom tells us of their initial visit with a psychiatrist when Paul was 3, "After only twenty minutes with the doctor, he told us that Paul would never be able to do much, and that we should think about putting him in a facility or home. He could not have been more WRONG!!!!"

By | 2019-07-29T11:20:44+00:00 Jul 29, 2019|Faces of Fragile X|Comments Off on Faces of Fragile X: Paul

Fragile X Advocacy – August Recess Visits

For the third year in a row, we are partnering with Rare Disease Legislative Advocates, a project of the EveryLife Foundation, to schedule Fragile X advocacy meetings with members of Congress and their staff during the August recess. Here is what you need to know.

By | 2019-07-29T09:55:56+00:00 Jul 29, 2019|Advocacy|Comments Off on Fragile X Advocacy – August Recess Visits

Chicago X Strides 2019 Photo Gallery

We had an amazing first annual X Strides Chicago on July 14, 2019.  Everyone that volunteered, ran, walked, organized a team, and donated made it a success. We were a force to be noticed that morning - raising awareness as people asked, What is Fragile X? View photos here.

By | 2019-07-25T22:35:13+00:00 Jul 25, 2019|Blog, X Strides|Comments Off on Chicago X Strides 2019 Photo Gallery

Faces of Fragile X: Varun

Varun is a shy, confident witty teen whose smile just melts everyone’s heart. He is fond of baking, dancing, art, and wants everyone to be always happy. Read more about Varun, Fragile X, and advice for newly diagnosed families from his parents.

By | 2019-07-25T11:32:40+00:00 Jul 25, 2019|Faces of Fragile X|Comments Off on Faces of Fragile X: Varun

Faces of Fragile X: Colin

Meet Colin. He has Fragile X syndrome. He knows everyone and has earned the nickname 'The Mayor.' His mom wants newly diagnosed parents to know, don’t ever give up. It’s ok and it’s not your fault. Advocate, educate and persevere.

By | 2019-07-23T11:37:06+00:00 Jul 23, 2019|Faces of Fragile X|Comments Off on Faces of Fragile X: Colin

Rep. Engel Raises Fragile X Awareness in Congress

Rep. Eliot Engel, D-NY-16, serves as the co-chair of the Fragile X Caucus in the U.S. House of Representatives. His co-chair is Rep. Chris Smith, R-NJ-4. To help raise awareness of Fragile X for National Fragile X Awareness Day, Rep. Engel had a statement. Read the full statement here.

By | 2019-07-22T15:07:30+00:00 Jul 22, 2019|Advocacy, Awareness Day|Comments Off on Rep. Engel Raises Fragile X Awareness in Congress
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