Sharing Your Special ‘Faces of Fragile X’

Year after year during National Fragile X Awareness Month (July), an extension of Fragile X Awareness Day on July 22, we ask you, the Fragile X community, to share your stories. Here’s why:

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

But education and awareness goes beyond telling your friends, neighbors, classmates, or coworkers about Fragile X.

Picture this: Somewhere someone just found out their child has Fragile X syndrome. Or a doctor is quietly informing a patient of a Fragile X-associated premature ovarian insufficiency (FXPOI) or tremor/ataxia syndrome (FXTAS) diagnosis.

Somewhere someone will learn they’re a premutation carrier and wonder if they’ll be able to have the family they always wanted.

And somewhere someone will feel alone, confused, and scared.

Your stories help assure them they’re not alone, that it’s OK to be confused and scared, and that they’ll make it through this just like so many have before them.

Your stories have the power and potential to light a fire in someone who will start fundraising on behalf of Fragile X.

Your stories, together with our ongoing advocacy efforts, can help ensure:

1. Public awareness of Fragile X and the risks of being a carrier.
2. Doctors know about Fragile X so they can diagnose patients.
3. Special educators understand how to reach and engage individuals individuals with Fragile X.
4. Policymakers understand the need to set policies and provide opportunities for people with Fragile X and all intellectual disabilities.
5. More researchers get involved in more Fragile X research.
6. Therapists understand the differences (and similarities) between Fragile X and autism, and how to treat them separately and together.
7. Awareness of clinical trials and studies, including support and guidance for individuals and their families so they understand the challenges they may be facing, and how to prepare for participation.