Participate in Fragile X Awareness Month with lights, social media posts, and more

World Fragile X Day will be honored July 22 in a number of ways

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by Mary Chapman |

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Scores of people globally are marking Fragile X Awareness Month in July with activities aimed at calling attention to the genetic condition and community needs. World Fragile X Day is on July 22.

The National Fragile X Foundation is marking the month by each day sharing a fact about fragile X syndrome on social media platforms Facebook, Instagram, and LinkedIn that can be shared with family and friends, using the hashtags #fragilex, #fragilexsyndrome, and #fragilexawareness. Fragile X is estimated to affect 1 in 4,000 men and 1 in 8,000 women.

“July is Fragile X Awareness Month! We understand the ups and downs that come with Fragile X; we’re here to support you during challenging times and as well as celebrating the wins! Join us as we share more about Fragile X throughout the month of July,” the organization noted on a Facebook post.

The foundation is also providing a quick way to explain fragile X to strangers or acquaintances, should the need arise, though printable Fragile X Awareness Cards, which explains the disease and includes a resource for more information.

There’s also a printable emergency card that patients can have with them that has information about the disease and spaces for emergency contact information, medication, and any allergies.

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Nominate an ‘Xtraoridinary individual’ in fragile X community

The organization is also offering a social media toolkit and fragile X awareness virtual backgrounds for Zoom meetings and is asking community members to nominate an “Xtraordinary individual” in their lives to help raise awareness.

For example, patient Kyle Dubeau was nominated by his mother, Sue, who wrote: “Kyle shows kindness to everyone and brings a smile to all who meet him! He’s one of a kind, and the best son, brother, and uncle! … A happy disposition and always willing to help with anything are his greatest strengths. We love him so much!”

In addition, the foundation is listing U.S. events to be held during the month, from a virtual workshop and Pilates session to a fragile X family playdate and fundraisers.

Then there is X Strides 2023, a way to raise awareness and funds for fragile X and and fragile X-associated conditions and disorders. Supporters may walk, run, or find another way to take “purposeful steps” during the month either alone, as part of a team, or virtually.

Registration is $40, which includes a T-shirt. Participants are invited to take a photo with their X Strides T-shirt and share their striding goals on social media during the month and tag @nfxfoundation. Those registering by July 3 will be eligible for a drawing for $25 NFXF Merchandise shop credit.

There is also a dedicated X Strides event for Fragile X Awareness Day.

Those not interested in participating may also make a donation for the foundation.

Fragile X Awareness Day events

Also for Fragile X Awareness Day, the Fraxa Research Foundation has several ways to get involved, including through its Step Up for World Fragile X Day peer-to-peer fundraiser which seeks to raise $50,000 for fragile X research. The organization will help set up a fundraising page, which can be shared with family, friends, and coworkers.

As part of the foundation’s Shine a Light on Fragile X effort, supporters are also encouraged to join the foundation’s illumination team, which helps get landmarks and other prominent structures locally, nationally, and internationally lit to help heighten awareness. Thus far, some 370 illuminations are planned.

Awareness day participants are also asked to contact local and state government offices about having July 22 officially proclaimed World Fragile X Day. The foundation will provide a toolkit which includes templates, outreach information, and post-proclamation press releases.

Other ways to participate include spreading the word about World Fragile X Day on social media, organize a “Learn About Fragile X” event in schools or communities, and sharing stories with local media about the disease’s impact.

Those wanting to get more information about getting involved with World Fragile X Day can contact Holly Roos at [email protected].

The foundation is providing an interactive World Fragile X Day Activity Map on which awareness day supporters can find out what activities are planned globally and add their own activities. Possibilities include hosting a picnic or cookout for fragile X families or organizing a fundraiser such as a 5K walk or run, or bowling event.