In the spring of 2005 Marathon High School administrative assistant Linda Brickheimer organized staff and students to participate in a fundraising bike ride for the Ronald McDonald house in Marshfield, WI. This facility was used by the Beraneks when Saul was in the hospital in Marshfield. Participants rode a 20 mile bike ride.
In 2006, we organized a 10 mile bike ride and run to raise money for FNMS. This was the first year we targeted raising money for FNMS, the Foundation of Nager and Miller Syndrome, as it was the group providing our family with emotional and medical support and information. We raised around $3,000.In 2007, we had the idea of having an ultra-mini triathlon. Like an item on a “bucket” list, a triathlon is something that many people would like to complete in their lives but are intimidated by. Using distances achievable for families and novices, the event grew. We raised around $5,000 for FNMS.In 2008, we grew yet again. We added the athlete division and began timing the event. We also raffled off some great items like a hunting knife custom made by Saul’s grandpa and pottery by FNMS founder, Margaret Hogan. With nearly 100 participants overall in the two triathlon events, the day was a huge success. The founders of FNMS were able to travel from Chicago to participate in the event, which made it a really special day. We raised around $6,300, and could not have been happier!
In 2009, we added a web page and a professional timing company. The weather was cool but the competition was hot. We raised around $5,000. Some of our 2009 racers used our event as a starting point to a summer of training and triathlons. An article was featured in the Wausau City Pages describing their journey and mentioning our event. After the race we spoke to many racers on how to improve the race for 2010.
2010 is our 5th anniversary. We have designed a cool retro logo and will commemorate the race with yellow shirts. We are committed to maintaining the family feel of the event. From serious athletes looking for a tune-up race, to first-timers, we welcome you. Volunteers from around Wisconsin will make this event one of the best of the summer for you and your family to attend. We hope you’ll join us!
The Foundation for Nager and Miller Syndromes (FNMS) is an international support group dedicated to helping those affected by these two similar genetic conditions which involve severe facial and limb anomalies, but does not usually affect intellect.
These syndromes affect one’s ability to see, hear, breathe, eat, walk, talk and write. FNMS serves as an information clearinghouse to help educate families and professionals about Nager and Miller syndromes. FNMS’ extensive library of resources and medical reports on these rare conditions are available by request. Challenged families join the FNMS network for support, referrals and sharing of helpful experiences.
FNMS has been a parent-run volunteer organization for 15 years. FNMS is a not-for-profit organization with a 501(c) (3) status. This means every dollar donated directly benefits those in need of FNMS services, and that contributions are tax deductible by law.