New families

Welcome to IDEAS. I am sure you are feeling overwhelmed, physically and emotionally drained after receiving the news that your child has duplication 15q syndrome. The good news is that you are not alone and you have found IDEAS. Many families find IDEAS to be their lifeline and a wealth of information. Nothing compares to the feeling of knowing that there are many other families all over the world, going through or have gone through, what you are feeling right now.

IDEAS provides many updates through our website. We are continually adding new information. We hope that you find the website helpful and we are always open to suggestions/feedback. I want to inform you of several important bits of information on our website.

First, you will find information on many different topics on our website. You can view past issues of our newsletter, visit the IDEAS store, and read about other children with dup 15q syndrome, to name a few. We also have a message board and a yahoo group, where you can ask any questions to our families. The message board is found on the home page. The yahoo group is found at www.yahoogroups.com and the group is Inverted-Dup15. There is also a group for families in Europe, listed as idic15eu.

Second, it is important that you visit the Register with IDEAS icon on the home page of the website. Here is where you will join our mailing list. We publish a newsletter, called The Mirror, four times a year. We also distribute various mailings throughout the year. We do not share this information with anyone and it is important that you fill out the form completely.

Finally, IDEAS has a wonderful program called Parent Match. This program matches new families with mentors from the IDEAS family. The mentors have gone through a training program and are available to talk with you. Many families find it helpful to talk to someone who can answer some of your questions first hand and offer you support. You simply need to call the Parent Match coordinator and she will do the rest. Please check out the Parent Match section on the website or call 1-888-64-IDEAS.

I know this is a difficult time for you and your family, but know that IDEAS is here for you. I want to personally welcome you to IDEAS and hope to meet you at one of our conferences or regional gatherings. Please do not hesitate to call me at 1-888-64-IDEAS or email me at info@idic15.org. I would love to hear from you.

Warm regards,
Kadi Luchsinger
IDEAS Executive Director

January 7, 2008