Thu 9 Jul 2009
UPDATE: We have received such a great response about the walk. Many have asked who to make a check out to or how to officially register. We are working to get an online payment and registration going. In the next few weeks I will send an email out to those who are “pre-registered” with more detailed instructions. Thanks for being patient and keep spreading the word! If you are considering walking, please leave a comment below and I will be sure to update you with all the details.
I am so happy to announce that there will be a 22q11 awareness walk on Saturday, August 22nd, at 8:00am in downtown Glen Ellyn, IL. The walk will be 2.2 miles, the cost is $22 for adults, $11 for children, 3 and under are free. Everyone is welcome! Proceeds will benefit the genetics department at Children’s Memorial, the 22q11 Awareness Foundation and “1 in 100”, a CHD advocacy group. Thanks to Pink Hippo, Maddy’s Organic Meals and Liberty Gardens for offering to sponsor us. We are still looking for sponsors, so if you or someone you know might be interested please contact me at janedeitrich______at________yahoo.com.
The walk was suggested and is being sponsored by the ladies at The Pink Hippo. Julie and Gretchen have given our family so much love and support and wanted to reach out to others dealing with this diagnosis. When she approached me about helping to coordinate a walk, I was thrilled.
Many of you already are aware of 22q11, but here is a short version of why this is such a worthy cause. While 22q11 was once thought to be rare(1 in 4000 births) the latest studies show that it is closer to 1 in 1200 births, making it almost as common as Down Syndrome. But because the symptoms vary so much from person to person, this syndrome is difficult to diagnose and complicated to treat. There are 186 known symptoms of 22q11. There is no cure. Please help us support this worthy cause!
We don’t yet have the set-up to accept online registration or payment so if you’d like to participate in the walk or make a donation, please leave a comment and I will contact you to make arrangements. You need not leave your email address in the body of the comment, I will contact you through the email you sign on with. Please sign up by August 1st so that we can get all the goodies together in time