Yearly Archives: 2019

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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!!!!"

Fragile X Advocacy – August Recess Visits

By |2019-07-29T09:55:56-04:00Jul 29, 2019|Advocacy|

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.

Chicago X Strides 2019 Photo Gallery

By |2019-07-25T22:35:13-04:00Jul 25, 2019|Blog, X Strides|

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.

Faces of Fragile X: Varun

By |2019-07-25T11:32:40-04:00Jul 25, 2019|Faces of Fragile X|

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.

Faces of Fragile X: Colin

By |2019-07-23T11:37:06-04:00Jul 23, 2019|Faces of Fragile X|

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.

Rep. Engel Raises Fragile X Awareness in Congress

By |2019-07-22T15:07:30-04:00Jul 22, 2019|Advocacy, Awareness Day|

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.

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