Faces of Fragile X: Aaron

By |2019-09-13T16:52:02-04:00Sep 13, 2019|Faces of Fragile X|

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.

What is Early Check?

By |2022-04-25T13:47:41-04:00Sep 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.

Faces of Fragile X: Avi

By |2019-08-02T10:38:46-04:00Aug 2, 2019|Faces of Fragile X|

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.

Faces of Fragile X: Paul

By |2019-07-29T11:20:44-04:00Jul 29, 2019|Faces of Fragile X|

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!!!!"

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