Supporters getting ready for Fragile X Awareness Month
Buildings in 16 countries to shine in awareness colors in July
Supporters worldwide are gearing up to celebrate Fragile X Awareness Month, an initiative held each July to boost recognition of fragile X syndrome and advocate for funding to improve the lives of people living with the rare disease.
The monthlong event is to be celebrated alongside the fifth annual World Fragile X Day on July 22, which the FRAXA Research Foundation started in 2021 to raise awareness and highlight progress in fragile X research. The date has also been recognized as National Fragile X Awareness Day in the U.S. since 2000.
“We celebrate World Fragile X Day to honor everyone everywhere who is affected by Fragile X,” Holly Roos, community services director for FRAXA, said in an emailed statement to Fragile X News Today. “Thanks to families and researchers and advocates and sponsors, research on Fragile X is moving full speed ahead toward effective treatments and ultimately a cure.”
Returning for World Fragile X Day this year is FRAXA’s effort to illuminate landmarks, buildings, and bridges worldwide in teal blue or orange in celebration of those with the disease, which is characterized by a wide range of cognitive, developmental, and behavioral fragile X symptoms.
“Over 400 landmarks in 16 countries are already confirmed to participate this year, we are excited to watch that number grow as World Fragile X Day gets closer,” Eric Welin, FRAXA’s technical specialist and web developer, said in the emailed statement. “More than anything, World Fragile X Day is about helping families feel seen, supported, and connected no matter where they live.”
Events will ‘shine a light’ on progress
An interactive global activity map is available for supporters to find and add landmarks to be lit up in their areas.
FRAXA is offering several other ways to help spread the word. The organization encourages supporters to reach out their local elected officials to request that their cities or states officially proclaim July 22 as World Fragile X Day, and says it can provide a toolkit to help.
People can also raise awareness by posting on social media, organizing educational events, or sharing their stories with local media outlets. All donations and fundraising efforts for Awareness Day will go to FRAXA to fund fragile X research.
Those who want to get involved can contact FRAXA via email.
“Every lighting, event, and conversation on World Fragile X Day,” Roos said, brings the world “closer to a better future for those living with Fragile X. This July 22nd we’ll shine a light on that progress in every corner of the world.”
The U.S.-based National Fragile X Foundation (NFXF) also provides a list of ways to get involved in fragile X awareness throughout July and the rest of the year.
That includes things like advocating to Congress for research funding and policies that will better the lives of people with fragile X, and working to educate others on social media and in local communities.
NFXF provides printable fragile X awareness cards with facts about the rare disease and a Zoom virtual background to support these awareness initiatives. It also has an online store where NFXF merchandise can be purchased.
The organization said it will engage with communities and advocacy partners to organize family meetups, support research breakthroughs, and launch other awareness campaigns.
As in previous years, NFXF is asking community members to nominate and share the story of an “Xtraordinary individual” in the fragile X community. The stories will be shared on social media to raise awareness.
Also returning is X Strides, a fundraising event in which participants register to walk, run, bike, hike, or gather as a team throughout July, with various prizes for fundraisers.
On July 12th will be the 2025 Cincinnati Fragile X Family Conference, being held at Cincinnati Children’s Hospital Medical Center, where experts will present on a range of fragile X-related topics. Families and researchers can register to attend in person or virtually until July 5. There is no fee to register, and there will be an option to donate to support those who need help with travel costs.
NFXF notes that individuals can keep an eye on its Facebook page for the latest news and events.
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