Denny and Marcia Haugen know how to throw a party! Their December 9, 2023, second annual Fragile X Christmas party in Waverly, Iowa, was a smashing success. Their nearly 100 generous guests enjoyed live Christmas music, food, and drinks while learning more about Fragile X. In all, they raised $16,670 (so far — you can still donate! ) in support of the National Fragile X Foundation!
The Woodley family attended last year’s fundraising event and were so pleased with the turnout and the cause that they asked to help organize this year’s event. Kari Woodley also shared their family story of one of their three children being diagnosed with Fragile X syndrome.
Meet the Haugens
Denny Haugen is a current NFXF board member. He and his wife Marcia have been actively involved with the NFXF and its mission ever since they learned of their son Aaron’s diagnosis nearly 30 years ago (NFXF was founded in 1984).
Aaron’s diagnosis came at age 10. For Aaron, his parents, and his sister Angela, who was just 12 at the time, the news drastically changed all of their lives.
Their circle of family and friends — plus doctors and other specialized professionals — were there to help guide and support them as they came to understand what the diagnosis meant and how to move forward to give Aaron what he needed to live his best life.
Today, Aaron is an independent and active member of his community in Waverly, Iowa, a town with a population of around 10,000. He has worked in dining services at nearby Wartburg College for over a decade and lives independently in a Larrabee Center apartment. The Larrabee Center meets various support needs for individuals in a community-based setting.
Aaron also starred in a documentary called “Not So Fragile,” which premiered in 2019 at Wartburg College. It was produced by the college’s Journalism-Communications department and made him and his family local celebrities. Last year’s Fragile X Christmas guests were treated to a showing of the film.
“Not So Fragile X” Trailer
Aaron has also been the “sideline spirit” cheering on the Wartburg Knights football team for the last 20 years. The entire team and coaches have embraced his enthusiasm and he earned the moniker when his picture was added to the team’s ongoing printed programs with the title Sideline Spirit. He travels with the team and helps from the sidelines, including giving play signals and encouraging fans to cheer louder.
Meet the Woodleys
Kari and Fisher Woodley also live in Waverly with their three children: Nellie, age 5, and twins Maklin and Ellory, age 2. Their ages are significant because Nellie was diagnosed with Fragile X syndrome at 3 years old, just five days before the birth of the twins.
Said Kari during her presentation, “After we learned some more facts about Fragile X during my pregnancy with our twins, we decided that it was necessary to have Nellie tested for Fragile X. Both Fisher and I knew in our hearts what the results would be before the test but needed the confirmation to move forward. … five days before our twins Maklin and Ellory were born we got the call … .”
Kari ended her presentation with a heartfelt appeal for more research on females with Fragile X syndrome. “A large portion of the research we are advocating for is specific research for females with the full mutation. It is less prevalent and most of the time less severe than males with the full mutation. It would be very useful to have research provided for the females and how to support them in education and life. We look forward to the foundation being able to provide more research on those topics with the funding and support of those who donate.”
The first and second annual Fragile X Christmas parties together have raised more than $32,000. The National Fragile X Foundation thanks the Haugen family and Kari and Fisher Woodley for their selfless support and is grateful for their ongoing participation in the foundation’s mission to serve the entire Fragile X community.
