IL SB1566

In 2006 and 2007, The Evanosky Foundation worked to expand newborn screening in the State of Illinois to include lysosomal storage disorders (LSD). There are approximately 40 known LSDs, one of which is MLD—the disease that John, Christopher and Jack Evanosky have. Lysosomes function as the “garbage disposal” for the cell, and when they are missing a substance that helps them to break down nutrients, these substances accumulate and become toxic. In all cases, if left untreated, LSDs will lead to death. Click here for a fact sheet that we have compiled on LSDs.

After coordinating efforts with a variety of groups and individuals, The Evanosky Foundation was pleased to announce that IL SB1566 was filed on February 9, 2007. It was a bi-partisan bill that was authored by Senator Dale Righter (R) and co-sponsored by Senator Carol Ronen (D) and Senator M. Maggie Crotty (D). In the House of Representatives, the bill was sponsored by Representative JoAnn Osmond (R) and Representative David Miller (D). On November 5, 2007, Governor Rod Blagojevich signed this bill and passed it into law, making Illinois the first state in the country to screen for five fatal childhood diseases. If detected and treated early, these diseases can be treated and provide a child with an opportunity to lead a much better life. Click here to view the Governor’s press release.

Even if you do not live in Illinois, SB1566 can benefit you and your family because other states will be able to learn from Illinois and follow its example so that all children within this country can be screened for these diseases.

What is SB1566?

For the exact language of the bill, please visit the Illinois General Assembly website.

Need more information?

For a downloadable fact sheet on LSDs and SB1566, click here.