July is National Fragile X Awareness Month, an annual event set aside to bring attention to the rare genetic condition.
In celebration of patients, caregivers and other community members, the theme this year is “Xtraordinary.” In addition to the month-long activities, July 22 is National Fragile X Awareness Day.
“Each year, the NFXF [National Fragile X Foundation] and the fragile X community celebrate all of July as National Fragile X Awareness Month, with the goal of expanding public awareness and educating those who are in a position to help make a difference,” the Foundation states on it’s event website. “We strive to do this every day, but once a year, in July, we bang our drum even louder to raise awareness about some very Xtraordinary people.”
Specifically, the organization seeks to raise awareness about the disease and those it affects, the risks of being a genetic carrier, and the importance of clinical trial participation. The NXFX also hopes to educate physicians about their roles in diagnosis and care, underscore teachers’ roles in reaching and engaging fragile X patients, helping policymakers understand how they can they help the community, teach therapists about differences and similarities between fragile X and autism, and involve more scientists in fragile X research.
To help more people learn about fragile X, the organization is offering Fragile X Awareness Packets that include downloadable resources such as Zoom app backgrounds, a “What is Fragile X?” flier, educational posters, distributable “Know Me” cards, and customizable “Coloring Pages” for use with crayons or markers. You may order a free packet online here.
In addition, the NFXF wants to hear about special people in supporters’ lives — patients, caregivers, advocates, teachers, friends, or healthcare providers, for example — who have a fragile X connection. Nominated individuals will receive a certificate and be included on the organization’s social media platforms. Go here to submit nominations.
“It’s not only an opportunity for us to bond as a community, it’s a time to open ourselves up to the world and share our individual stories,” the organization states.
For Awareness Day on July 22, a host of buildings, bridges, monuments, and landmarks in the U.S. and Canada will be illuminated in teal — the official fragile X color — to help spread the word about the disease and honor the community.
“Although we may not be able to gather in groups this year, we still encourage you to visit or drive by lighting displays and share your experience with us,” states the Fraxa Research Foundation, which is coordinating the effort.
So far, some 61 landmarks will be bathed in teal, including Niagara Falls, Calgary Tower, Tucson’s Historic 4th Avenue Underpass, Aloha Tower in Honolulu, the Wrigley Building in Chicago, and Las Vegas City Hall. The Foundation will display images on Facebook, Twitter, and LinkedIn.
Last year, 21 landmarks were involved in the effort. Email [email protected] to add a landmark to this year’s list, or to plan a July 22 event.
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