By Kristin Bogart
Organized and hosted by Andrea and Kevin Marner, the 3rd Annual Quad Cities Fragile X Golf Outing on June 25, 2022, at the Byron Hills Golf Course in Byron Hills, Illinois, was a huge success — in spite of the threat of a downpour! Originally scheduled for a 7:30 am tee time followed by lunch, the Marners simply switched the two so lunch and raffles came first followed by a noon tee time.
Thanks to all their hard work and planning, everyone stayed positive and determined to make the day special for everyone involved. The threatening weather and last-minute schedule changes didn’t deter the 30-plus registered teams either. “A special shout out to all the teams involved because they showed up with 100% participation and didn’t let the delay sway their dedication to raising funds for Fragile X,” Andrea said. “What an absolute whirlwind of a day, which started early with a weather roller coaster. Thanks to Byron Hills Golf Course we were able to get all 18 holes in and the course held up beautifully.”
All in support of the National Fragile X Foundation, the event also included a $10,000 hole-in-one challenge, first- through third-place team awards, and contests for longest drive, longest putt, and ball closest to the pin.
Now in its third year, organizing an event of this size is no easy task. As the Marners posted on the QC Fragile X Outing Facebook page, “The deepest appreciation and love goes out to our family, friends, and newfound relationships. This doesn’t happen without all of you today.”
The Marners first became aware of the NFXF when their then 3-year-old son Reid was diagnosed with Fragile X syndrome. Our website helped guide them and they eventually signed up for a clinical trial at a Fragile X clinic — a member of the Fragile X Clinical and Research Consortium, a group of collaborative, independent clinics organized in 2006 by the NFXF in support of the clinics’ common goal of providing specialized care across the U.S. and beyond.
Andrea says, “We love being able to help in any way we can and this is something Reid also had so much fun with! He was doing fist pumps to everyone, and everyone just loves being around him! He is such a goofy, fun-loving kid and it was awesome for everyone to get to see that in him!”
Watch: 1st Annual Fragile X Golf Outing (2020)
For other golfers out there who want to help with fundraising, maybe this could be an event in your area?
Thank you to the Marner family and all of your fellow golf friends for supporting the NFXF! Together, We’re Stronger!
Stay tuned … the date for next year’s outing coming soon!
In-District Advocacy Opportunity with Rare Disease Legislative Advocates
It's that time of year! Join other rare disease advocates for in-district meetings with your Congress members and staff. You can help represent the Fragile X community!
The ABLE Employment Flexibility Act
The ABLE Employment Flexibility Act (H.R. 4672) permits employers to contribute to an employee’s ABLE account instead of a 401(k) – including an employer’s match. By saving it in the ABLE account it will not adversely affect most means-tested federal benefits.