EVENT DATE: Jun 05, 2016
We are hosting our 3rd Annual "Tee Off Fore A Cure" golf outing in honor of our son Levi. Levi suffers from a rare genetic disease called Sanfilippo Syndrome Type C.
Levi was diagnosed with Sanfilippo Syndrome / MPSIII type C in 2009, at the age of 10 years old. Sanfilippo Syndrome is a rare, fatal genetic disease with a life expectancy between 10-20 years old. Over time, children experience a neurological decline and lose their ability to walk, talk and eat on their own. It causes problems with speech, respiratory system, organs & joints. There is no cure or treatment at this time, but we have HOPE for a CURE!
Our mission in life is to spread awareness by sharing Levi's story as he battles this debilitating disease. We want to find a cure for Levi and other children affected with Sanfilippo Syndrome. Levi is a happy 17 year old who loves life. The thought of watching him decline from the energetic, upbeat giggly teenager he is keeps us motivated...and HOPEful that someday we will find a cure. You can read Levi’s Story on his website at http://www.levislifelovelaughter.org
We are teamed up with http://www.jonahsjustbegun.org an organization working to save our children. Please support this years event by making a donation in honor of Levi or any other child suffering from this disease.
If you would like to be part of the event in person there is still time to sign up your foursome and or join us for the dinner and raffle/auction! This is a fun event for all! Contact us @ firstname.lastname@example.org or 262-751-8695 for more information.
Thank You for your support!