Rett Syndrome Association of Illinois

Founder’s Letter

Welcome to the Rett Syndrome Association of Illinois, (RSAI) web site.

We are a 501 C-3 Not-for-Profit organization. The members of the Board of Directors consist of parents and community members who volunteer their time to run the organization.

How did we start?

In 1976, our first daughter Jill was born. She was originally diagnosed with Autism so we became active in the Nebraska Autism Society and the Autism Society of America. Nine years later she was correctly diagnosed with Rett Syndrome. We began getting calls from other parents about Rett Syndrome. In 1989, Janell and I hosted the first Rett Syndrome support group meeting at our house. Seven people attended the first meeting representing four girls with Rett Syndrome. In 2015 we have over 140 families in Illinois who have girls and one boy with Rett Syndrome on our mailing list. We send out a monthly email with RSAI updates on what is going on. Since 1989 we have hosted support group meetings, local conferences, picnics, swimming and bowling parties and many other events to help families meet other families and network together. In October of 1992 we started October is Rett Syndrome Awareness Month. We believe thru awareness comes understanding and support.

We want to make sure our Federal, State and Local representatives are aware of the needs our children/adults with Rett Syndrome have and our concern for their future.

Many families and their friends have done a tremendous amount of volunteer work and fund raising for RSAI. We are fortunate to have sponsors and financial supporters who have helped us raise money to further our mission. RSAI has supported ongoing research with donations.

We continue to provide the best events and programs we can as a volunteer organization. There are many opportunities for us to do more. This is where we need your help and support. We encourage you to get involved. Thanks to all the people who have so generously given of their time and money. You have helped make a difference. If you would like to know more, please call me at 847-609-0029 or email

Love is Caring and Sharing

Paul Jochim, his wife Janell and daughter Jill in the center
Rett Syndrome Association of Illinois Founder