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DTSTART;VALUE=DATE:20260722
DTEND;VALUE=DATE:20260723
DTSTAMP:20260615T230131Z
CREATED:20260615T230131Z
LAST-MODIFIED:20260615T230131Z
UID:10000009-1784678400-1784764799@fragilexnewstoday.com
SUMMARY:Fragile X Awareness Day/Month
DESCRIPTION:So what is Fragile X awareness? During National Fragile X Awareness Month it’s especially evident. You and our combined voices amplify the message far and wide. For the past few years during Awareness Month\, our and your Facebook posts alone are seen one million times. One million times! \nAnd that doesn’t include all of the posters\, t-shirts\, media stories\, your social media\, blog posts\, visitors to our website\, talking to neighbors\, teachers\, doctors … the list — and the impact — go on and on. You should be proud of what you do! \nAnd yet\, people still ask\, “Fragile what?” \nSadly\, that isn’t limited to your average person on the street. You still hear it from doctors\, therapists\, special educators\, teachers\, family members\, researchers\, and more. Raising awareness means continuing to: \nEducate doctors — About Fragile X syndrome\, FXPOI\, FXTAS\, and other premutation carrier issues.\nHelp newly diagnosed families — With information about Fragile X and what the future holds.\nBring Fragile X families into the community network — For support and education at the NFXF.\nEncourage researchers — To research Fragile X.\nMotivate families — To participate in Fragile X studies and trials.\nAdvocate to Congress — For research funding and policies that create better tomorrows.\nEducate therapists and educators — About the treatments and interventions available now.\nTell extended family members — What a diagnosis means.\nAnd\, of course\, tell friends\, neighbors\, friends-of-friends\, random people on the street\, and\, well\, everyone\, about Fragile X and how they\, individually\, can best support individuals living with it. \nWe all do this every day\, but July is a special month to have a concerted effort! \nWorking alone\, we couldn’t do all that we do for awareness\, but by working together\, we amplify our impact.
URL:https://fragilexnewstoday.com/event/fragile-x-awareness-day-month/
CATEGORIES:National Fragile X Foundation
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ORGANIZER;CN="National Fragile X Foundation":MAILTO:contact@fragilex.org
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20260722
DTEND;VALUE=DATE:20260723
DTSTAMP:20260115T163708Z
CREATED:20260115T163708Z
LAST-MODIFIED:20260115T163708Z
UID:10000004-1784678400-1784764799@fragilexnewstoday.com
SUMMARY:World Fragile X Day
DESCRIPTION:World Fragile X Day is a global initiative of FRAXA Research Foundation. This global awareness event held each year on July 22 to honor individuals and families affected by Fragile X syndrome\, the most common inherited cause of intellectual disability and a leading known genetic cause of autism. Established collaboratively by organizations and advocates around the world\, the day brings together families\, researchers\, clinicians\, and supporters to raise understanding of Fragile X and highlight the progress being made through scientific research. \nA signature feature of World Fragile X Day is the global landmark illumination initiative\, where hundreds of buildings\, bridges\, monuments\, and public spaces light up to raise awareness. These illuminations span continents and time zones\, creating a powerful visual message of solidarity and support. Communities also participate through local events\, educational programs\, media outreach\, and social campaigns that amplify stories of courage\, resilience\, and hope. \nWorld Fragile X Day provides families with an opportunity to feel seen and connected\, especially those who often experience isolation in their daily lives. For researchers and clinicians\, the day reinforces the shared commitment to accelerating scientific progress. \nBy uniting people worldwide\, World Fragile X Day celebrates the strength of the Fragile X community and highlights the meaningful advances being made toward a brighter future.
URL:https://fragilexnewstoday.com/event/world-fragile-x-day/
CATEGORIES:FRAXA
ATTACH;FMTTYPE=image/jpeg:https://fragilexnewstoday.com/wp-content/uploads/2026/01/Peace_Bridge_NY-square-National-Fragile-X-Day.jpg
ORGANIZER;CN="FRAXA Research Foundation":MAILTO:hroos@fraxa.org
LOCATION:
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20260716
DTEND;VALUE=DATE:20260720
DTSTAMP:20251124T223544Z
CREATED:20251124T184150Z
LAST-MODIFIED:20251124T223544Z
UID:10000001-1784160000-1784505599@fragilexnewstoday.com
SUMMARY:20th NFXF International Fragile X Conference
DESCRIPTION:The NFXF International Fragile X Conference is the premier educational event for the Fragile X community. This biennial event brings individuals with Fragile X and their families\, caregivers\, friends\, and professionals together to learn from one another and celebrate Fragile X. This unique experience is not only educational but also empowering.
URL:https://fragilexnewstoday.com/event/20th-nfxf-international-fragile-x-conference/
LOCATION:Louisville Marriot Downtown\, 280 W Jefferson St\, Louisville\, KY\, 40202\, United States
CATEGORIES:National Fragile X Foundation
ATTACH;FMTTYPE=image/jpeg:https://fragilexnewstoday.com/wp-content/uploads/2025/11/NFXF-Conference-2-e1763759898668.jpg
ORGANIZER;CN="National Fragile X Foundation":MAILTO:contact@fragilex.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20260701
DTEND;VALUE=DATE:20260801
DTSTAMP:20260615T225808Z
CREATED:20260615T225808Z
LAST-MODIFIED:20260615T225808Z
UID:10000007-1782864000-1785542399@fragilexnewstoday.com
SUMMARY:X Strides 2026
DESCRIPTION:Join us for this year’s X Strides to raise awareness and funds to support the Fragile X community! We focus our awareness efforts during July\, Fragile X Awareness Month\, but feel free to start early or hold your walk or day at the park anytime! You can register as an individual\, start a team\, or join an existing team! \nWHO: Anyone Anywhere! \nWHAT: Walk\, run\, gather at a park\, or take a road trip. You decide what you want to do to raise awareness of Fragile X\, take photos in your Fragile X gear\, and share on social media! \nWHEN: Anytime during the month of July\, Fragile X Awareness Month. \nWHERE: Anywhere you choose! \nCOMING TO CONFERENCE? We’re having an X Strides walk for ALL conference attendees on Friday morning July 17th – from the hotel to 4th Street and back! \nWHY: to support the National Fragile X Foundation to provide knowledge\, resources and tools for all families impacted by Fragile X.
URL:https://fragilexnewstoday.com/event/x-strides-2026/
CATEGORIES:National Fragile X Foundation
ATTACH;FMTTYPE=image/png:https://fragilexnewstoday.com/wp-content/uploads/2026/06/Xstrides-NFXF.png
ORGANIZER;CN="National Fragile X Foundation":MAILTO:contact@fragilex.org
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20260616
DTEND;VALUE=DATE:20260620
DTSTAMP:20260615T230005Z
CREATED:20260615T230005Z
LAST-MODIFIED:20260615T230005Z
UID:10000008-1781568000-1781913599@fragilexnewstoday.com
SUMMARY:2026 20th NXFX  International Fragile X Conference
DESCRIPTION:This biennial conference presents a unique opportunity for nearly 1\,000 parents and professionals from around the world to gather and learn the latest about Fragile X. \nThe conference is geared toward all members of the Fragile X community: family members\, caretakers\, professionals\, and researchers. There are even special sessions for individuals living with Fragile X syndrome. Where learning meets lasting memories.
URL:https://fragilexnewstoday.com/event/2026-20th-nxfx-international-fragile-x-conference/
LOCATION:Louisville Marriott Downtown\, 280 W. Jefferson Street\, Louisville\, KY\, 40202\, United States
CATEGORIES:National Fragile X Foundation
ATTACH;FMTTYPE=image/jpeg:https://fragilexnewstoday.com/wp-content/uploads/2026/06/FragileX2024Conf_Final-86-1.jpg
ORGANIZER;CN="National Fragile X Foundation":MAILTO:contact@fragilex.org
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BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20260530T080000
DTEND;TZID=America/Chicago:20260530T150000
DTSTAMP:20260115T163759Z
CREATED:20260115T163759Z
LAST-MODIFIED:20260115T163759Z
UID:10000003-1780128000-1780153200@fragilexnewstoday.com
SUMMARY:Patrick's Pals 3 on 3 Basketball Tournament
DESCRIPTION:Since 1997\, when Patrick Vershbow was four years old and only three years into the challenges of living with Fragile X syndrome\, Patrick’s PALS 3-on-3 Basketball Tournament has been around in support of the amazing efforts of FRAXA! Somehow\, 29 tournaments later\, here we stand ready to mark our 30th anniversary in 2026. \nThe PALS Team – James & Pamela Vershbow\, Jon Pressman\, Bill Rome\, Steve Savarese\, Jim Marks\, Scott Katz\, Andrew Pressman\, Peter Savarese\, Dan Marks and Steven Rome – would love nothing more then to not have met this milestone\, but here we are\, still needing to raise awareness and money while at the same time knowing and believing that FRAXA is closer to treatments and a cure than ever before! \nUp to 40 teams will play in the double-elimination 3-on-3 basketball tournament. A vast artificial field-space will be transformed into games and activities available to families with children of all ages. The day will include breakfast and lunch\, raffles and a silent auction of sports memorabilia\, game tickets\, art and more. Special guests will attend. And an ice cream truck will provide a yummy mid-day treat. \nLearn more about Patrick’s PALS past and present by contacting PALS Director James Vershbow at (617) 599-2641 or patricks.pals@comcast.net or visiting Patrick’s PALS website. \nTHANK YOU!
URL:https://fragilexnewstoday.com/event/patricks-pals-3-on-3-basketball-tournament/
LOCATION:The Track at New Balance\, 91 Guest Street\, Boston\, MA\, 02135\, United States
CATEGORIES:FRAXA
ATTACH;FMTTYPE=image/jpeg:https://fragilexnewstoday.com/wp-content/uploads/2026/01/PatricksPals-FRaxa-e1768426312156.jpg
ORGANIZER;CN="FRAXA Research Foundation":MAILTO:hroos@fraxa.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260522T073000
DTEND;TZID=America/New_York:20260522T150000
DTSTAMP:20260126T210515Z
CREATED:20260126T210515Z
LAST-MODIFIED:20260126T210515Z
UID:10000005-1779435000-1779462000@fragilexnewstoday.com
SUMMARY:2026 FRAXA Charity Golf Tournament
DESCRIPTION:Over the past 18 years\, we have raised over $465\,000 for FRAXA Research Foundation. This year\, we’re aiming to shatter the half-million-dollar mark! \nThis year’s event will be held on Friday\, May 22\, 2026\, at the Bradford Country Club in Haverhill\, MA. Kristen and Kevin Murphy has helped us put together another great tournament\, including the Hole-in-One contest and a mulligan included in the $150 per golfer. \nTo hit our ambitious goal\, we need your help to sell more sponsorships and secure more donations for our auction. Sports tickets\, golf course foursomes\, nights out at restaurants—anything you can contribute will make a difference! \nWith your help\, we can continue working towards effective treatments and a cure for Fragile X syndrome. Most importantly\, thank you all for your past support. We look forward to seeing you at the Bradford Country Club!
URL:https://fragilexnewstoday.com/event/2026-fraxa-charity-golf-tournament/
LOCATION:The Bradford Country Club\, 201 Chadwick Rd.\, Haverville\, MA\, 01835\, United States
CATEGORIES:FRAXA
ATTACH;FMTTYPE=image/jpeg:https://fragilexnewstoday.com/wp-content/uploads/2026/01/FRAXA-Golf-2026--e1769453647490.jpg
ORGANIZER;CN="FRAXA Research Foundation":MAILTO:hroos@fraxa.org
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260224T120000
DTEND;TZID=America/New_York:20260224T130000
DTSTAMP:20260126T205930Z
CREATED:20260126T205930Z
LAST-MODIFIED:20260126T205930Z
UID:10000006-1771934400-1771938000@fragilexnewstoday.com
SUMMARY:Family Conversations
DESCRIPTION:Family Conversations is a virtual webinar series created to bring together parents\, caregivers\, and loved ones of individuals with Fragile X syndrome. Designed as an open\, welcoming space\, the series invites families to connect\, share their experiences\, ask questions\, and support one another through every stage of the Fragile X journey. Each session focuses on topics that matter most to families—daily challenges\, practical strategies\, emotional wellbeing\, and the latest updates in Fragile X research and care. \nWhat makes this series unique is that it is led entirely by FRAXA’s staff and board\, all of whom are parents of children or adults with Fragile X. Their lived experience shapes every conversation. They understand the joy\, uncertainty\, exhaustion\, and hope that families carry\, creating an environment that feels authentic\, compassionate\, and deeply relatable. This peer-to-peer foundation fosters meaningful discussions and a strong sense of community. \nFamily Conversations also serves as a bridge between families and the research that drives progress. Participants gain insight into current studies\, emerging therapies\, and FRAXA’s mission to accelerate treatments—always presented in clear\, accessible language. Whether someone is newly navigating a diagnosis or has been connected to the Fragile X community for years\, the series offers practical guidance and heartfelt connection. \nBy bringing families together from across the country and around the world\, Family Conversations reaffirms that no one walks this journey alone. These gatherings strengthen community ties\, empower families with knowledge\, and inspire hope through shared understanding and support.
URL:https://fragilexnewstoday.com/event/family-conversations/
CATEGORIES:FRAXA
ATTACH;FMTTYPE=image/png:https://fragilexnewstoday.com/wp-content/uploads/2026/01/FRAXA-Family-Conversations-Image-e1769454319888.png
ORGANIZER;CN="FRAXA Research Foundation":MAILTO:hroos@fraxa.org
LOCATION:
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20260223
DTEND;VALUE=DATE:20260225
DTSTAMP:20251124T184428Z
CREATED:20251124T184428Z
LAST-MODIFIED:20251124T184428Z
UID:10000002-1771804800-1771977599@fragilexnewstoday.com
SUMMARY:NFXF Advocacy Day 2026
DESCRIPTION:Every year\, families\, self-advocates\, caregivers\, siblings\, doctors\, and researchers come together to advocate for the entire Fragile X community and work toward our collective goals.\n \nThis event is focused on shared priorities and policy initiatives. As a non-partisan organization\, we aim to promote a unified message that supports the needs of the entire Fragile X community. Together\, we can make a meaningful difference!
URL:https://fragilexnewstoday.com/event/nfxf-advocacy-day-2026/
LOCATION:TBA\, Washington\, DC\, United States
CATEGORIES:National Fragile X Foundation
ATTACH;FMTTYPE=image/jpeg:https://fragilexnewstoday.com/wp-content/uploads/2025/11/NFXF-Advocacy-Day-e1763760977494.jpg
ORGANIZER;CN="National Fragile X Foundation":MAILTO:contact@fragilex.org
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