Fragile X Awareness Day Set to Take International Stage July 22
The first FRAXA Research Foundation lighting in Niagara Falls. (Courtesy of Katie Clapp)
Katie Clapp said she thinks there were just five scientists researching fragile X syndrome when she attended her first conference about the disorder shortly after her son’s diagnosis in 1992.
Today there are hundreds, if not thousands, of teams around the world working on the condition, which can cause cognitive impairment, and learning and behavioral challenges. It is the most common cause of inherited intellectual disability and autism spectrum disorders.
Katie Clapp and her husband, Michael Tranfaglia (right), enjoy a moment with their son, Andy Tranfaglia. (Courtesy of Katie Clapp)
That global collaboration is part of the reason why the organization Clapp co-founded with her husband — the FRAXA Research Foundation — began celebrating World Fragile X Day on July 22, the same day that National Fragile X Awareness Day is recognized. July also is the designated awareness month for the disease in the U.S., another factor Clapp notes.
“What about all the families in India or Australia or Canada who feel marginalized by our U.S.-centric focus? We can help empower other country groups as well because they have a role to play in the solution,” said Clapp, who lives in Newburyport, Massachusetts, in an interview with Fragile X News Today.
The FRAXA Research Foundation, which Clapp and her husband Michael Tranfaglia, MD, officially launched in 1994, has invested well over $32 million in more than 600 scientific grants in 19 countries.
One study from the Universitat Pompeu Fabra in Barcelona, Spain, is testing two treatments against a biomarker researchers discovered. The FRAXA Research Foundation collaborated with U.K.-based company Healx, which uses AI to discover new and existing treatment methods that can be repurposed for other conditions.
It’s also given nearly $700,000 to fund the FRAXA Drug Validation Initiative, which tests prospective treatments in fragile X mice. The testing center at the University of Chile has assessed more than 100 compounds. An Alzheimer’s treatment, Zatolmilast (BPN14770), developed by Tetra Therapeutics and tested in that lab, is the subject of a Phase 3 clinical trial for male adults (NCT05358886) and adolescents 12 to under 18 (NCT05163808).
The first FRAXA Research Foundation lighting in Niagara Falls. (Photo courtesy of Katie Clapp)
World Fragile X Day began in 2021 when Clapp wanted to commemorate the international collaboration to find a treatment for fragile X. In its first year, according to Clapp, the organization lit up about 300 landmarks around the world.
This year it plans on reaching the same number internationally, as well as lighting up landmarks in 46 U.S. states.
The foundation started lighting up landmarks in 2018 when a staff member worked to light up Niagara Falls in teal, the color of the organization’s logo. It was a cause for celebration, and 40 families flew out to experience the event at the waterfall.
Partners for World Fragile X Day include organizations from Argentina, Australia, Brazil, Chile, Georgia, and India.
Ways to get involved
The National Fragile X Foundation (NFXF), another partner for World Fragile X Day, offers a number of tools for Fragile X Awareness Day — and the month-long campaign — including printable fragile X awareness cards, emergency cards, and virtual Zoom backgrounds.
Patients, caregivers, family members, and advocates also are encouraged to get involved by educating doctors about the disease, helping families navigate a new diagnosis, and writing to local and national representatives to increase research funding for fragile X.
NFXF also encourages people to nominate someone to its “Xtraordinary individuals” page on the website. That includes family, friends, co-workers, and those affected by fragile X.
The nonprofit also is holding its 18th NFXF International Fragile X Conference in San Diego July 14–17, ahead of Fragile X Day. The invited speakers represent institutions and companies such as the UC Davis MIND Institute, Healx, Allos Pharma, and the National Institutes of Health. Parents, siblings, and patients are giving presentations.
If people are unable to push for landmarks to be lit in teal, they can share lightings on social media or organize an event for families, Clapp said. The point of World Fragile X Day and National Fragile X Day is for the uninitiated to learn more about the disease and its impact on their community.
“Having a child with special needs is so very isolating, so awareness is surprisingly important to people who are affected by fragile X,” Clapp said. “They want the rest of the world to know what’s going on.”
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