What would you like others to know about him? I want people to know that Cody is my reason. My reason why I do the things I do for the Fragile X Community. My [...]
Governor Hency McMaster proclaims July 22, 2019 as Fragile X Awareness Day in South Carolina. Read his entire proclamation.
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.
July 22 is National Fragile X Awareness Day. Wear green, pack your lunch, and donate your lunch money to the National Fragile X Foundation. And urge your coworkers do to the same!
John Menke has FXTAS. Read what his daughter, Kelly, has to say about him, FXTAS, research, advice to new parents, and more.
Governor Christopher Sununu proclaimed July 22, 2019 as Fragile X Awareness Day in New Hampshire.
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.
Momma Cherri heard about Jordan’s bell ringing and Fragile X Awareness Month, so she created a Fragile X burger and filmed an episode to educate her viewers about Fragile X syndrome and teach them how to make a Fragile X burger.
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.
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.
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 [...]
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.
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.
For this Father's Day, some very special kids are telling their dad's they love them and why in their own, unique ways. But the message is for all Fragile X dads who go the x-tra mile on this journey. To all of you - thank you!
Watch the session with the male self-advocates at the 16th NFXF International Fragile X Conference.