Janalee Heinemann, M.S.W.

Director of Research & Medical Affairs, Prader-Willi Syndrome Association (USA)

Education:
M.S.W., Washington University, St Louis, MO
Parent of an adult son with PWS

Prader-Willi syndrome background:
Volunteer for PWSA (USA) for 16 years prior to becoming Executive Director from 1997 – 2007. Co-founded the MO State Chapter of PWS; Wrote chapters for all three editions of Management of PWS; Wrote numerous articles, chapters, and two booklets on PWS; Presented at twelve national PWS conferences, the international PWSA conferences in Italy and New Zealand, and in several nations including Israel, Taiwan, China, Japan, Mexico, Chile, Monaco, Brazil, France, and Romania. Also presented at multiple state meetings and conferences; Current co-chair of the Coalition for Patients Advocacy Group (CPAG) with the Rare Disease Clinical Research Network (RDCRN).

Non PWS Professional Experience:
Oncology Pediatric Medical Social Worker at St Louis Children’s Hospital – 10 yr.; Hospice Social Worker-3 yr.; Child Abuse & Neglect Social Worker – 6 yr. Developed and ran multiple support programs and groups for children with cancer and their families; Developed several bereavement programs, and on a volunteer basis, for twelve years, has been the leader of the Homicide Bereavement Support Group in Sarasota, FL.

Honors: “Volunteer of the Year” award, Victim Assistance Program, Sarasota County Sheriff’s Office, 2001; President of PWSA (USA), 1991-1994; National PWSA(USA) Board Member, 1986-1991; “Service and Rehabilitation Award” from American Cancer Society, 1988; John Krey III award for “Outstanding Humanitarian of the Year”, 1991; Dean’s Fellowship at Washington University, 1981-1983; Summa Cum Laude, IVCC, 1975; “Volunteer of the Year” award, Illinois Dept of Children and Family Services, 1975; “.