Colin Ulrick suffers from a rare syndrome called Smith-Magenis Syndrome (SMS), which is characterized by distinctive facial features that progress with age, developmental delay, cognitive impairment, and behavioral abnormalities. Sensory integration issues are frequently noted. Children and adults have inattention, hyperactivity, and maladaptive behaviors, including frequent outbursts/temper tantrums, impulsivity, distractibility, disobedience, aggression, toileting difficulties, and self-injurious behaviors.
Colin’s mother Diane Urlick, her cousin and my nephew Tracy Sundberg, and I (Judy Bogdan) are hosting a fundraiser in honor of Colin called “Colin’s Backyard Olympics.” The event will have a tournament of games where teams of families, friends or individuals will compete against each other for a gold, silver, or bronze medal. There will be side activities, such as face painting for the children, along with a band and food stands, plus raffles and a Chinese auction. This event will be held in mid September 2011 in one of our local WNY area parks.
All proceeds will go to PRISMS (Parents and Researchers Interested in Smith-Magenis Syndrome) in an effort to contribute to research funding that is so desperately needed. According to Randy Beall, President of PRISMS, SMS is very rare and vastly under diagnosed with only 600 diagnosed cases in the world. This makes funding dollars very hard to come by. One way that funding is often acquired is for SMS families to hold fundraisers of their own. Out of love for Colin and the whole Ulrick family, we are holding our first annual Backyard Olympics to help support the efforts of PRISMS in finding ways to help SMS individuals. And we need your help.
Planning an event of this size takes a lot of work. This blog is a way for us to keep you informed of the progress of the planning up to date and also let you know how you can be of help. All help is needed and appreciate no matter how small or large. We also need donations for a Chinese auction, game referees and/or judges, sponsors, and just about any ideas, guidance or contribution of any kind. This is a new experience for all of us so any ideas will gladly be heard.
If you are interested in helping in anyway, please email us at the address below and we will get back to you just as soon as possible.
Thank you for your help and support!
Diane, Tracy and Judy
Event Coordinators
