M. Sheila Hebein

Sheila-HebeinFormer Executive Director, National Association for Down Syndrome

Hebein was born and raised in England. When her son, Chris, was born with Down syndrome in 1972 in Evanston, Illinois, some parents were still being advised to institutionalize their child. Hebein became involved with NADS when she joined their board of directors in 1974 and in 1979 she became their Executive Director and she held that position for 30 years. In that capacity she developed programs that trained parents to become support volunteers for new families, developed a foster care/adoption program, educated medical professionals, provided retreats for families whose children had additional diagnoses such as autism, developed a mentoring program for adults with Down syndrome and she was involved in many issues impacting children and adults with Down syndrome in Illinois and nationally.

In the late 1980s families began calling NADS looking for medical services for their adult sons and daughters with Down syndrome and eventually Hebein was able to convince Lutheran General Hospital in Park Ridge, Illinois, to develop a clinic for adults. Initially the clinic, now known as the Adult Down Syndrome Center, served patients 2 mornings a month, and now patients are served 5 days a week with a staff of 12. The clinic has served over 5,500 patients to date. Hebein actively served on the team of the ADSC until she retired from her position with NADS in 2009. She continues to be involved in the Down syndrome community by providing advocacy and other services.