FOUNDERS LETTER

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

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

We are a 501 C-3 Non profit organization.  The members of the Board of Directors consists of all parents who volunteer their time to run the organization. 

In 1976, our first daughter Jill was born.  She was originally diagnosed with Autism so we became active in the Nebraska Autism Society and also 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, my wife 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.  Now in 2008, we have over 125 families in Illinois who have girls with Rett Syndrome on our mailing list and we send out a newsletter to over 1000 people.  Since 1989, RSAI has hosted many support group meetings, local conferences, picnics, family days, and many other events to help families and to raise awareness.  Our biggest event is the Annual Dinner Dance and Auction, which is usually in September. 

One of our goals is to help provide support to the new parents that get the devastating diagnosis that their baby girl or boy, usually one, two or three years old, has Rett Syndrome.  We also want to develop more partnerships with service providers that will offer education, therapeutic and recreational opportunities for our children.  We need to make our State and Local representatives aware of the needs our children have and our concern about their future. 

Many families and their friends have done a tremendous amount of volunteer work for RSAI.  Last year at our 18th Annual Dinner Dance and Auction we had over 250 people in attendance.  We are fortunate to have sponsors and financial supporters who have helped us raise money to further our cause. RSAI has donated most of the auction proceeds for Rett Syndrome research. 

We continue to provide the best services 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 and thank all of you who have given so generously of your time and money.  You have helped make a difference in people lives. To those of you who want to get involved at any level, please email me at  PJochim@aol.com or call 847-310-8876 for more information. 

Together we can reach more families and make a bigger difference in our children's lives. 

Love is Caring and Sharing  

Paul Jochim
Founder
Rett Syndrome Association of Illinois