For decades, Janalee Heinemann has been one of the most influential and beloved leaders in the Prader-Willi syndrome (PWS) community – a guiding force whose energy, vision, and compassion transformed PWSA | USA into the world-class resource it is today.
Janalee’s journey began as the stepmother to Matt, a young man with PWS. That personal connection, combined with her background in social work, gave her both the heart and the insight to address the urgent needs of families.
She first served on the PWSA | USA Board of Directors (1986–1989), became President (1991–1996), and then stepped into the role of Executive Director (1997–2007). When she began, the national office had a staff of just two and only a handful of educational materials. Under her leadership, crisis counseling, medical and educational consultations, and emergency assistance became cornerstones of the organization. She expanded literature and resources, built strong professional partnerships, and secured grants and fundraising to sustain the growing mission – always with an “army” of dedicated parents and professionals by her side.
Dr. Dan Driscoll, longtime colleague and friend, shares:
“She is an exceptional person who is an icon in the Prader-Willi field, both nationally and internationally. Under her leadership as the Executive Director, she turned PWSA | USA into a first-rate patient advocacy and support group… In her role as Vice President of the International Prader-Willi Syndrome Organisation (IPWSO), she became the ‘face’ for PWS to families around the world. All of us in the PWS community have benefited from her presence in our lives.”
Even after stepping down as Executive Director, Janalee’s commitment never wavered. From 2007–2017, she served as Director of Research & Medical Affairs, fostering critical research collaborations and advancing medical understanding of PWS. As Dan mentioned in the quote above, she also represented PWSA | USA globally as Vice President of IPWSO, traveling extensively to support families, train professionals, and share her expertise.
Parent and board member Jim Kane reflects:
“Janalee’s boundless energy, scientific insight, writing skills, gentle kindness, humor, and passion made her a priceless person for everyone involved with PWS. She could take the most complex science and make it understandable, and she brought comfort and hope to countless families — often arriving home from international travel on a Sunday, only to answer calls at the office Monday morning.”
Today, Janalee is retired and living in Sarasota, Florida with her husband, Al, though “retired” is a loose term. She continues to share her wisdom, encourage advocates, and support families whenever she can. As she once said:
“Life happens. We all have brick walls — you either let them stop you or find ways to climb over them or break them down. In the early days, we just had to climb higher on each other’s shoulders or carry a bigger hammer to break down those walls.”
Janalee has spent her career climbing those walls for others — and showing us all how to do the same.
Journey of Hope Gala Honorees
Dr. Moris Angulo
Dr. Merlin Butler
Dr. Susie Cassidy
Fausta Deterling
Gene Deterling (Posthumously)
Dr. Dan Driscoll
Joan Gardner
Jim Gardner (Posthumously)
Janalee Heinemann
Dr. Vanja Holm (Posthumously)
Jim Kane
Lota Mitchell
Jennifer Bolander has been serving as a Special Education Specialist for PWSA (USA) since October of 2015. She is a graduate of John Carroll University and lives in Ohio with her husband Brad and daughters Kate (17), and Sophia (13) who was born with PWS.
Perry A. Zirkel has written more than 1,500 publications on various aspects of school law, with an emphasis on legal issues in special education. He writes a regular column for NAESP’s Principal magazine and NASP’s Communiqué newsletter, and he did so previously for Phi Delta Kappan and Teaching Exceptional Children.
Evan has worked with the Prader-Willi Syndrome Association (USA) since 2007 primarily as a Crisis Intervention and Family Support Counselor. Evans works with parents and schools to foster strong collaborative relationships and appropriate educational environments for students with PWS.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Children’s Institute of Pittsburgh. She graduated from Duquesne University receiving her Bachelor’s and Master’s degree in Education with a focus on elementary education, special education, and language arts.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Program (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Children’s Hospital in Denver supporting families and school districts around the United States with their child’s Individual Educational Plan.
Founded in 2001, SDLC is a non-profit legal services organization dedicated to protecting and advancing the legal rights of people with disabilities throughout the South. It partners with the Southern Poverty Law Center, Protection and Advocacy (P&A) programs, Legal Services Corporations (LSC) and disability organizations on major, systemic disability rights issues involving the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), and the federal Medicaid Act. Recently in November 2014, Jim retired.