Share Your Special ‘Face of Fragile X’

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Share Your Special ‘Face of Fragile X’

July is National Fragile X Awareness Month, an extension of Fragile X Awareness Day on July 22, a day officially recognized by Congress to increase awareness and advocacy for Fragile X.

This year we want to hear from you

We invite you to share your story about someone special in your life living with Fragile X. Your collected stories will be known as “Faces of Fragile X.” (If this sounds familiar, yes, “Faces of Fragile X” was part of a previous NFXF project a few years ago.) 

Take me to the form so I can share my story »

Working together, your stories can help educate the public about Fragile X and inspire more research toward new treatments and an eventual cure.

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

Picture this: Somewhere someone just found out their child has Fragile X syndrome. Somewhere a doctor will quietly inform their 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 can 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.

Please consider sharing your story about someone special to you living with Fragile X. Your story, 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.

Share your story using the form below and we’ll use it during this year’s National Fragile X Awareness Month—and beyond—to raise awareness about Fragile X for everyone.

Share Your Face of Fragile X Story

By | 2019-05-03T11:25:37+00:00 May 3, 2019|Advocacy, Awareness Day|Comments Off on Share Your Special ‘Face of Fragile X’