3rd Annual WSS Foundation Kids Triathlon 

What is Wiedemann-Steiner Syndrome?  Wiedemann-Steiner syndrome is a rare genetic disorder resulting from mutations in the MLL (aka KMT2A) gene on the long arm of chromosome 11. The syndrome, originally described in 1989 through recognition of similar features, was not officially verified until 2012 through whole exome sequencing.  There are currently about 750 people that have been diagnosed with WSS worldwide.  WSS is often related to global developmental delays, sleeping difficulties, feeding and digestion complexities, atypical facial features, short/petite stature, hypotonia, dental issues, hairy elbows, long eyelashes, etc.  Those affected by WSS endure hours of physical, speech, behavioral, occupational, and music therapies and academic supports every week.  In their first few years of life, WSS children experience far more medical procedures and surgeries than most of the population will experience in a lifetime.

What is the Wiedemann-Steiner Syndrome Foundation?  The Wiedemann-Steiner Syndrome (WSS) Foundation was founded in 2016 and serves as the cornerstone of knowledge for individuals affected by the syndrome, their families, physicians, and researchers. Together we advocate for comprehensive research with meaningful discoveries and connect the WSS community through thoughtful engagement. http://www.wssfoundation.org/

What will the money raised from the Triathlon be applied towards?  In 2016, the Wiedemann-Steiner Syndrome Foundation set out to raise $250,000 to initiate crucial research for Wiedemann-Steiner Syndrome. With the help, commitment and generosity of the friends and family of those affected by WSS, we reached that initial goal in November of 2018. While our first monetary benchmark has been reached, it is not a finish line, rather a launching point. The Foundation’s work has only just begun. In 2019, the WSS Foundation will be able to fund multiple mouse projects to gather comprehensive baseline data on WSS. As baseline data is collected, the Foundation will initiate research on particular symptoms affecting the WSS population. Disease specific research will help doctors, educators, and parents better understand WSS and will hopefully lead to pharmaceutical companies taking an interest in developing treatments for WSS patients; ultimately allowing our WSS Warriors to reach their greatest potential. The Foundation also supports multiple regional gatherings around the world, including its annual international conference. These gatherings allow families an opportunity to be around those that “get it”, an experience un-paralleled by any other.

Why should you and your child participate in the WSS Foundation Kids Triathlon?  The WSS Foundation Kids Triathlon is a perfect mix of fun, exercise, and promotion of inclusiveness.  Your child’s participation in the event and seeking out sponsorships recognizing their accomplishments on June 9^th will not only be self-rewarding, but will provide a sense of community involvement while helping a tremendous cause.