Events Local and Global Marking July, Fragile X Awareness Month

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by Mary Chapman |

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Xanamem for fragile X

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From posting yard signs to swapping out exterior lighting, people across the U.S. are poised to mark Fragile X Awareness Month, observed each July. A global day — July 22 — is also set aside, with illuminations worldwide helping to call attention to the genetic disorder.

Awareness and education are key to heightening the recognition, diagnosis, understanding, and management of fragile X syndrome, which is estimated to affect 1 in 4,000 males and 1 in 8,000 females.

Fragile X events seek to raise awareness among the general public, as well as policymakers, public authorities, industry representatives, scientists, and health professionals.

This year, the National Fragile X Foundation is providing supporters with several versions of fragile X yard signs to help spread awareness. Each sign is printed on demand, and delivered with all the necessary materials to be displayed, including stakes. Messages include, “Say hi! And learn more about fragile X syndrome,” and “Our home is green for fragile X.”

Green is the official color for fragile X.

The signs are $30 each, with shipping included. A portion of proceeds will be used to support fragile X families.

“While broad messages serve a role, seeing someone near you share about Fragile X has a much larger impact,” the foundation states on its website. “No longer is it a term you hear, but it is close to home. You see their home. You know them. It is more real.”

The foundation is also encouraging participants to change the exterior lighting of their home throughout July to green. Other ideas include changing the porch lighting, or stringing green lights around landscaping.

Whether supporters change their lighting or post a sign, the organization is asking them to take a photo and share it on social media with the hashtags #FragileX and #WorldFXDay.

For Fragile X Awareness Day, the Fraxa Research Foundation is continuing its annual effort to spread awareness by getting structures and landmarks illuminated around the world. The campaign began in 2018 when Fraxa got Niagara Falls lit up. The following year there were 22 illuminations across the United States. That number increased to 67 last year, during which the Fragile X Association of Australia garnered 64 illuminations.

This year, 252 lightings scheduled globally — so far.

“World Fragile X Day celebrates families impacted by Fragile X and highlights the progress of research to find a cure. On World Fragile X Day we shine a light on Fragile X by illuminating monuments and landmarks around the world. We gather with friends and family to celebrate loved ones who shine in the face of Fragile X,” Fraxa states on its World Fragile X Day announcement page.

Supporters are asked to get families together at a nearby illumination site, or host a fundraiser to benefit care and research. Fraxa is keeping track of activities on a global interactive map.

Fraxa is again partnering with the Fragile X Association of Australia this year, and has expanded its collaborations to include the Fragile X Research Foundation of Canada, Fragile X South Africa, Fragile X Society-India, Fragile X Argentina, Eu Digo X-Brazil, the University of Chile, and, in the U.S., the National Fragile X Foundation and the Fragile X Resource Center of Missouri.