Archive for July, 2009

Hello everyone,

Online registration is now available for Slow and Steady: A Walk for 22q11 Awareness on August 22nd, 8:00am in Glen Ellyn, IL. Registration will be open until August 1st. Please follow the link below:

The online registration is being generously provided by our sponsor, The Pink Hippo. Although donations/registration fees will not be tax deductible (we are working on that for next year), you can rest assured that this is safe and the most efficient way for us to get everyone signed up.

Please enter “Ramona” in the voucher code to delete the automatic shipping charge. If you’d like a shirt for a child three or younger, you can do that by registering them as a “Child Walker”, the cost is $11. Children three and under without a shirt are free. If you would like to be a sponsor or are unable to walk but would like to make a donation, please select “Donation Non-Walker”.

I will have a printable flyer sometime next week. If you’d like a copy, please leave me a comment below and I’ll send it to you! Please consider asking for your community’s support of this worthy cause. If you have any questions or difficulty registering, please let me know, I’d be happy to help.

Thanks so much, I can’t wait to meet everyone at the walk!


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

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 :)

Thank you!