4th Annual WSS Foundation Kids Triathlon (The Virtual Edition) 

The WSS Foundation Kids Triathlon is one of our most favorite days of the year and has become a beloved community tradition. Given the circumstances surrounding COVID-19 and with the health of our participants and their family's being of the utmost importance, this year's event will be a virtual one. Typically, we have participants swim, bike and run, but know that access to facilities may be limited given COVID-19 limitations. Participants of this year's triathlon can build their own triathon by choosing ANY three sports to implement at anytime convenient for them between July 10th and September 15th. For example, a participant might choose to shoot 50 baskets, hit 50 baseballs, and play frisbee with a parent or sibling for 15 minutes OR a participant might choose to skateboard for a mile, juggle a soccer ball for 15 minutes, and hop on a pogo stick for 10 minutes. We are saddened that we won't see everyone in person, but can't wait to see what our participants choose to do given a bit of creative freedom and are excited to offer the triathlon to a worldwide community.

How this Year's Triathlon Registration Process will Work:

May 7th- Registration opens with a suggested registration fee of $30

June 24th- First set of t-shirts* to be ordered

July 8th- First set of t-shirts to be delivered (locally to Sacramento), made available for pick up, or mailed (outside of Sacramento)

July 10th- Francesca's 8th Birthday and the kick off to the 2020 WSS Foundation Kids Triathlon. Participants can build and carry out their triathlon at any point between now and September 15th. 

August 26th- Didn't register in time to get your t-shirt for the first order, a second order will be made on August 26th at 3:00 PM

September 4th- Second set of t-shirts to be delivered (locally to Sacramento), made available for pick  up, or  mailed (outside of Sacramento)

September 15th- International WSS Awareness Day and the conclusion of the 2020 WSS Foundation Kids Triathlon

*T-shirts will only be given to those particiants that pay at least the $30 suggested registration fee. Due to shipping fees outside of the US, we will be unable to offer to t-shirts to those participants outside of the US. 

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 1,000 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 WiedemannSteiner Syndrome (WSS). With the help, commitment and generosity of the friends and families of those affected by WSS, the foundation reached that initial goal in November 2018. While the foundation’s first monetary benchmark has been reached, it is not a finish line but rather a launching point. The foundation’s work has just begun. In 2019, the WSS Foundation released a request for proposals for researchers to apply for funding related to baseline investigations on WSS. Five researchers from five countries provided letters of intent and three were asked to submit full proposals. At the start of 2020, Dr. Hans Bjornsson of the University of Iceland was awarded the foundation’s first grant in the amount of $200,000. 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 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 unparalleled 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 will not only be self-rewarding, but will provide a sense of community involvement while helping a tremendous cause.