Faces of Fragile X

Fragile X syndrome is an inherited intellectual and developmental disability, and each individual is — well, individual. They are Xtraordinary in their own way.

Below are just a sampling of individuals with Fragile X — a gallery we call Faces of Fragile X. Click on each photo to learn more about them. And, remember, one day you may meet someone with Fragile X syndrome, or you may already know someone. They may be shy, anxious, have difficulty making eye contact, and have short attention spans, but they want to be social. They want to be your friend. Be friendly, patient, and talk to them. They will warm your heart.

Learn more about Fragile X syndrome and support Fragile X awareness, education, and research with a donation.

Faces of Fragile X: Ian

By Dan Whiting|2019-07-18T16:20:53-04:00Jul 18, 2019|Faces of Fragile X|

Ian has Fragile X syndrome. Meet Ian and see what his mom says about him, what she wants her community to know about Fragile X, and her advice for new parents.

Faces of Fragile X: John Menke

By Dan Whiting|2019-07-20T15:23:20-04:00Jul 16, 2019|Faces of Fragile X|

John Menke has FXTAS. Read what his daughter, Kelly, has to say about him, FXTAS, research, advice to new parents, and more.

Faces of Fragile X: Jack

By Dan Whiting|2019-07-14T08:19:31-04:00Jul 14, 2019|Faces of Fragile X|

Jack is a very happy 7-year-old boy. He is healthy, loves to swim, loves animals, and, while is he delayed, he continues to gain skill and learn new things every day.

Face of Fragile X: Logan

By Dan Whiting|2019-07-12T12:02:06-04:00Jul 12, 2019|Faces of Fragile X|

What would you like others to know about him? Logan is 10 years old and was diagnosed at 15 months old. It hasn’t been an easy road but with help from family, friends, and his teachers he has progressed and learned so much.

Faces of Fragile X: David

By Dan Whiting|2019-07-11T13:34:23-04:00Jul 11, 2019|Faces of Fragile X|

Meet our friend David. David likes the show Law and Order because they fight the bad guys. He had a lot of fun at last year’s Conference.

Faces of Fragile X: Patrick

By Dan Whiting|2019-07-09T10:02:22-04:00Jul 9, 2019|Faces of Fragile X|

What would you like others to know about him? Pat is funny and likes to laugh. He does not speak but is funny in his own way. As an example, if you ask, "How [...]

Faces of Fragile X: Avery

By Dan Whiting|2019-07-05T13:26:40-04:00Jul 5, 2019|Faces of Fragile X|

Avery is beautiful. She has the best curly hair around. She loves animals, routines, her neighbor friends, her cousins, and putting on makeup with her auntie. She is so smiley and always excited to see her cousin Elliott.

Faces of Fragile X: Nicholas

By Dan Whiting|2019-07-03T13:19:47-04:00Jul 3, 2019|Blog, Faces of Fragile X|

What would you like others to know about him? He is helpful and very patient when we drag him all over the place. What is your favorite thing about him? His smile is amazing and he is so fun to hang out with. If you could tell someone who doesn’t know anything about Fragile X one thing, what would it be? People with Fragile X have a very genuine heart. School can be a challenge but if you stay involved you can make it through. Once you get through the school years it is easier for them to be themselves.

Sharing Your Special ‘Faces of Fragile X’

By Dany Petraska|2022-08-04T15:02:21-04:00May 3, 2019|Faces of Fragile X|

Your stories help educate the public about Fragile X and inspire more research toward new treatments and an eventual cure. Here’s why.

The Friendship of Julian and Jonah

By NFXF|2019-04-23T09:55:57-04:00Apr 15, 2019|Faces of Fragile X|

My son has Fragile X Syndrome and I often felt sad that friendship -- which I value enormously -- was something Julian didn’t even notice. He didn’t miss it; I missed it for him. After all, wishing for friends for your kid is pretty universal. Inclusive schools and communities are great on a societal level, but maybe not enough on a personal level.

My Boys and Fragile X

By NFXF|2022-08-04T14:50:13-04:00Jul 1, 2014|Faces of Fragile X|

"The results of genetic analysis confirm the diagnosis of Fragile X syndrome, " said the pediatrician. Years later, those words still bring me to tears. We are blessed with two sons, Nathan, 29, and Jason, 24, who both have Fragile X syndrome. For those of you who have never heard of Fragile X syndrome, it is the most common cause of inherited intellectual disability and the most common known genetic cause of autism.

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