- Fragile X-associated Disorders
- Treatment & Intervention
- Support the NFXF
If you haven’t heard by now, we are hosting our first annual “Let ‘Em Know Virtual 5k Run/Walk for Fragile X” in honor of National Fragile X Awareness month in July! Thanks to the nearly 270 fundraisers who registered for this unique event! It’s not too late to join the fun—running or walking on your own time, as the spirit moves you, for Fragile X awareness—so just visit our Crowdrise page to learn more. While we can’t guarantee you’ll get the very cool shirt, we can guarantee you’ll have fun and feel good about doing so!
In the meantime, we want to gratefully acknowledge our amazing LINKS groups who put together the more rigorously scheduled walks, runs and hikes this month! Organizing these events is hard work that goes above and beyond, and the dedicated souls who do so continue to be an inspiration to the rest of us!
Memorial Day weekend saw the host their first 5K/1 mile walk in Pound, Virginia. The event attracted some 55 runners and 24 walkers, and was so popular the organizers ran out of t-shirts and awards. Even Wonder Woman showed up for the fun!
Thanks to Brittany Marshall and group members for your hard work raising awareness and $$$ for Fragile X!
The broke all records for their first-time Walk for Fragile X event by raising nearly $30,000! The 10 families involved in raising the money were astounded and pleased at how well they did. The planning team included LINKS group leader Buffy Grande and three teammates—Kacey Dowling, Monica Pena and Julie McMahon—who all did a fabulous job handling the countless details involved in staging such an event. Friends provided graphic art for the highly favored dri-fit t-shirts. The event also featured three varieties of music from a guitarist during registration, the Robinson High School Pep Band on the walk trail to cheer people on, and “Oh Susannah” at the amphitheater for the conclusion where the kids had a fabulous time.
Participants were treated to generously donated (and decadent!) cupcakes, brownies, and cookies, along with fruit, granola bars, and beverages. The “Oh Brother Lemonade Stand” made a comeback, organized by big sis Georgia Grande, and the kids collected $88 for the walk fund. The morning festivities concluded with a lovely train ride around the park. Proceeds will be used to bring Fragile X expert Dr. Marcia Braden to the area for a daylong educational conference. Congratulations everyone on your well-deserved success!
The (FXRCMO) held its “7th Annual “Fragile, Not Broken Walk for Knowledge” at Tilles Park in Ladue, Missouri, on June 1. The 1-mile noncompetitive fun walk was enjoyed by more than 250 friends and families of the Fragile X community. Festivities included pony rides, a “bounce house,” musical therapy demonstrations, a photo booth, animal balloons, raffles, silent auctions, and numerous other games, treats and informational displays. Many families raised money by setting up websites at firstgiving.com/fxmo to “tell their stories.” Support from the St. Louis community through sponsorship and numerous donations was truly overwhelming and very moving for the dozens of volunteers who organized the event. Congrats on another great job by our established pros in the “Show me” state!
The First Hike-for-Hope organized by the took place June 1 in Richland, Washington to raise money and awareness for fragile X syndrome. The 3-mile trek up Badger Mountain attracted about 50 participants. The Pacific Northwest weather cooperated by presenting an absolutely beautiful day. Post-hike activities included a bouncy house, face painting, live music and a fire truck. LINKS group leader Michelle Hall and group members would especially like to thank The City of Richland firefighters for being the highest level sponsor and for also participating in the event. Congratulations Washington hikers!
While we are almost halfway through 2013, we hope you will take a moment to look back at the many accomplishments the NFXF enjoyed in 2012 by perusing our Annual Report. While we would like to claim responsibility for the many successes featured in the report, the truth is none of it would be possible without you, our many supporters and friends in the Fragile X community. So our heartfelt thanks to everyone who made and continue to make our work possible!
Please inform us (firstname.lastname@example.org) of any errors/omissions you find in the Annual Report. Despite our best intentions, we do make mistakes and want to know about them so we can fix them now and avoid them in the future!