Every year on July 22, FRAXA Research Foundation and partners celebrate World Fragile X Day with communities around the world. Join Us!
World Fragile X Day (WFXD) celebrates families impacted by Fragile X syndrome and highlights advancements of research to find effective treatments and ultimately 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 launched World Fragile X Day in 2021 uniting Fragile X families and organizations all around the world.
Step Up for World Fragile X Day
Step up for World Fragile X Day is a peer to peer fundraiser. 100% of the money raised will go to FRAXA to fund Fragile X research! This is a very easy way to make a big difference! Simply go to the GoLively World Fragile X Day page, choose “I want to fundraise for this!” and fill out your information to set up your page.
Once your page is set up, share it with your family and friends! Encourage them to donate and to join your fundraising team with a page of their own! You can create a whole team of fundraisers who are working with you to fund important Fragile X research.
Join the Illumination Team!
Each year volunteers reach out to landmarks, buildings, bridges, and more to help Shine a Light on Fragile X. You can be a part of this process to build our impact each year. As part of the illumination team, you will get locations for outreach, sample emails, and details for reaching out. You can reach out to as few or as many locations as you would like in your city, state, or internationally.
World Fragile X Day Proclamation
You can reach out to your local Mayor or to your state Governor to request a World Fragile X Day proclamation. This is an easy and powerful way to bring awareness to Fragile X. We will provide you with a Proclamation Toolkit which includes wording for proclamations on each level, outreach information, and press releases for after the proclamation is confirmed.
To get involved with World Fragile X Day contact Holly Roos at hroos@fraxa.org.
Lastest World Fragile X Day Updates
World Fragile X Day 2024: A Global Celebration of Awareness and Research Progress
Recap of World Fragile X Day 2024, a global event by FRAXA that highlighted research advances and raised awareness for Fragile X syndrome. Explore beautiful photos of landmark illuminations around the world.
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Understanding Anxiety in Fragile X: Insights from Dr. Carrie Buchanan’s Webinar
Discover effective strategies for managing anxiety in individuals with Fragile X syndrome. Learn from Dr. Carrie Buchanan’s insights on non-pharmacological treatments, common anxiety triggers, and current medication options to improve quality of life.
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Celebrate World Fragile X Day: July 22, 2024 – Global Landmarks Light Up
Celebrate World Fragile X Day on July 22, 2024 by lighting up landmarks. Join us in honoring Fragile X research and supporting affected families worldwide.
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10 Year Vision for Fragile X Research – Dr. Elizabeth Berry-Kravis & Dr. Patricia Cogram
In this video we hear from FRAXA Investigators Dr. Patricia Cogram, Professor at the University of Chile, and Dr. Elizabeth Berry-Kravis, Professor at Rush University Medical Center as they reflect on the progress that has been made and visualize what they see happening in the next 10 years for people living with Fragile X syndrome.
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World Fragile X Day Is Lighting the Way for Fragile X Research
The world shone brightly on July 22 for World Fragile X Day. An impressive 383 locations around the globe lit up to promote awareness and highlight the progress of Fragile X research.
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Potential Upcoming Advances in Fragile X Research
Dr. Peter Kind, Director of the Patrick Wild Centre and Professor of Developmental Neuroscience at the University of Edinburgh, and Dr. Nahum Sonenberg, James McGill professor of biochemistry at McGill University, share their optimism about the next 10 years of Fragile X research. They discuss where they think the next big discoveries will emerge.
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10 Year Vision for Collaborations That Transform Fragile X and Autism Research
The future offers hope for people living with Fragile X syndrome. Collaborations between the Fragile X community and other disability organizations help to provide understanding and advancement of research to bring effective treatments to families. FRAXA’s Dr. Mike Tranfaglia talks with Autism Science Foundation’s Allison Singer about the importance of their collaboration as we look forward to the next 10 years.
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20 Years of Advancing Fragile X Research: Progress Toward a Cure
Dr. Mark Bear joined the Fragile X field in 1999 when he received a research grant from FRAXA Research Foundation. At the time, we recognized the symptoms of Fragile X, and we knew its cause: a single missing protein. But we knew very little else. Dr. Bear traces the discoveries that now give us great optimism of finding effective treatments and ultimately a cure for Fragile X.
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Tetra’s Fragile X Clinical Trial – The Most Successful So Far
Dr. Mark Gurney, CEO of Tetra Therapeutics, discusses how one of the earliest clues to the biology of Fragile X led to the most successful Fragile X clinical trial to date. FRAXA and Tetra began working together after a key FRAXA-funded study caught the attention of Dr. Gurney. Through the FRAXA Drug Validation Initiative, Dr. Patricia Cogram was able to conduct preclinical validation experiments with Tetra’s lead compound in record time, paving the way for clinical trials.
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Raising Awareness and Funds for Fragile X Research at Barre3
“It was a fun and sweaty way to bring the community together for a great cause and a great workout.” FRAXA thanks Katie Bolin for organizing this event and others during the month of July. We also send a special thanks to Katie Heaps, owner of Barre3 Belleview Station, for supporting the Bolin family and FRAXA.
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Fragile X Syndrome: In Pursuit of a Cure Webinar
A global webinar titled “Fragile X Syndrome: In Pursuit of a Cure,” took place on July 22, 2021 to commemorate World Fragile X Day. This complimentary event is co-organized with WuXi AppTec. We are delighted that more than 5,000 registered from more than 50 countries worldwide, coming together to raise awareness of Fragile X, and to foster collaborations towards effective treatments and ultimately a cure.
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2021 FRAXA Awards – Recognizing Perseverance and Dedication
In conjunction with World Fragile X Day 2021, FRAXA Research Foundation is proud to recognize its annual award recipients. This year’s recipients exemplify the perseverance and dedication that has made FRAXA a global leader in Fragile X research for nearly 30 years. We are fortunate to partner with these individuals on research, community support and awareness efforts.
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