Kenneth (Ken) Smith, 62, of Sarasota, FL, died peacefully on March 7, 2023, at Tidewell Hospice House with his life partner, Patty LaRoche, by his side. He is also survived by his mother and stepfather, Wilma and Clinton Beauford of Pittsburgh, and his sister, Kathy Smith. Ken was preceded in death by his father, Roland Smith.
For 27 years, Ken coordinated and managed specialty programs for Prader-Willi syndrome (PWS) at The Children’s Institute in Pittsburgh. Ken served on the PWSA l USA Board of Directors for 18 years and became the PWSA l USA executive director. He was greatly admired by parents, coworkers, medical professionals, and those who have PWS. In Ken’s final days, the many testimonies sent, all mentioned his intellect, great sense of humor and his calm and caring demeanor.
There will be a private memorial on Siesta Key beach at a later date.
TESTIMONIALS
Ken will always have my utmost admiration. Besides his extraordinary knowledge of the complexities of the syndrome, Ken had a very calm and caring demeanor. Through thousands of meetings, I never saw him lose his cool or professionalism. He always listened to both sides of an issue, and never imposed his ego in the situation. In fact, Ken liked to work more behind the scenes and uplift everyone else to the public. He was adored by all the children and young adults with the syndrome and admired by their parents. Ken was a true humanitarian with a gentle soul. His light shines on.
– Janalee Heinemann, Retired
Past positions with PWSA | USA: Executive director, medical and research coordinator, board member and board president, mother of a son with PWS
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For the dozens of adults with Prader-Willi syndrome who may have been an inpatient at The Children’s Institute or attended a PWSA | USA Conference, Ken Smith represented one of the most recognizable and friendliest faces. What set Ken apart was his ability to recall a detail about someone’s life that made them feel extraordinary. When the Adult Advisory Board first formed in 2003, Ken was one of the inaugural leaders, providing guidance and direction to adults who wanted their voices to be heard. His calm approach and sense of humor has left an unforgettable impression on the lives of many people with Prader-Willi syndrome over the years.
– Mary K. Ziccardi, Regional Director, REM Ohio, Co-chair Professional Providers Board, past member PWSA | USA Board of Directors
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Ken was always a bright light in the room with his contagious smile and unwavering positive attitude with everything. We will never really know how many lives he touched, but those of us that had the honor and privilege of knowing and being around Ken have been so lucky over all the many years he was there for us and our children.
– Tammie Penta, PWSA | USA board member and mother to Victor, living with PWS
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Dear Ken: It is with a very heavy heart that we write this note. Our family owes you a deep debt of gratitude, from your life saving extra effort to get Kate admitted to your clinic in Pittsburg, to your velvet hammer handling of her, which sent her off on a new safer and healthier direction, to your years of service to the PWS community, to the many years of friendship, and finally your leadership of PWSA| USA during several stressful periods of change. You dedicated your life to special “friends” as you called them and their families. Many people, families, and the world are better off from what you unselfishly committed. You will be sorely missed in this world and I’m quite sure Our Lord will welcome with open arms into his world.
– Kit and Jim Kane (former PWSA | USA board member), parents to Kate, living with PWS
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Dear Ken: I am so very sad to know you have been battling cancer. I have missed connecting with you these past few years; you have never been far from my thoughts. I hope you can feel my genuine and deep care I feel for you, along with so many others who have known you and valued your leadership and friendship. You have touched and improved so many lives. I am proud to know you, today and always, my friend.
– Lisa Graziano, former PWSA | USA board member, mother to Cameron, living with PWS
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.