Kate Beaver, MSW, CSW-Family Support Counselor
Because her daughter has Prader-Willi syndrome, Kate had first-hand knowledge of the challenges families encounter with the syndrome and had valuable personal experience in how to access services and support for her family prior to joining the PWSA (USA) staff. As a Crisis Intervention and Family Support Counselor, Kate’s job is to promote a higher quality of life for individuals with PWS by providing much-needed education to anyone seeking information about PWS, including family members, professional providers, law enforcement representatives, and so forth. Kate also helps evaluate and individual’s environment (home, work, school, etc.) to help families arrive at solutions that improve the quality of life for the individual with PWS and those supporting him or her.
Kate’s favorite part of her job is helping everyone achieve his or her best life. Kate loves hot air balloons, both watching them sail and riding in them.
Mary S. Burr DNP, CPNP-Medical Coordinator
Mary Burr has been a pediatric nurse for 36 years and a pediatric nurse practitioner for 16 years. She also holds a Doctor of Nursing Practice degree. A resident of the Baltimore, Maryland area, Mary has spent her career caring for children and families affected by chronic endocrine and musculoskeletal diseases. She has developed an affinity for care coordination of complex medical problems and the multidisciplinary approach to care delivery. In May 2016, Mary joined the Kennedy Krieger Institute, a pediatric rehabilitation hospital in Baltimore. While at Kennedy, Krieger learned the importance, and challenges, of integrating multiple medical, educational, and social services into care provided to families and children with complex medical needs. With her extensive experience in the management of care for children with endocrine disorders (which includes Prader-Willi syndrome) and her general experience in the pediatric rehabilitation setting, Mary is well-prepared to serve the PWS community as PWSA (USA)’s Medical Coordinator.
Mary is married with two adult children and two grandchildren. She is a frequent volunteer at her church and in her community. She enjoys gardening, floral design cooking, and boating, and golf.
Diane Seely-New Parent Support Coordinator
Diane is a mother of five children. Her youngest child, Reagan, was diagnosed with Prader-Willi syndrome during infancy. Her four older children are: Justin (32); Kristin (29); Caitlin (26); and, Alisyn (25), all of whom all reside in Ohio.
Diane has been involved with PWSA (USA) for many years, first as a Parent Mentor and now as a New Parent Support Coordinator (since 2015). Diane is the first contact for families whose children have just been diagnosed with PWS.
“The need is great,” says Seely. “The best thing about our program is the sense of gratification from helping others…It’s therapeutic on both sides, for the parent and the parent mentor.” Diane adds that families find the Parent Mentoring Program to be a lifeline during a difficult time.
Diane spends her free time with her family and her labradoodle Goldie. She enjoys reading, and camping. Her goal is to take their RV to as many states as possible!
Stacy Ward, M.S.- Family Support Counselor
Stacy lives in Troy, NY with her husband, Jeff, her sons, Jeffrey (19) and Collin (15), and the love of her life, Freddy the Pitbull. She has been with PWSA since 2016. Stacy came to PWSA (USA) with 12 years of experience working with Prader-Willi syndrome and has worked with individuals and families living with several other disabilities in her previous role as a Professional Provider in New York. In addition, Stacy has a personal connection to the world of special needs as she has family members with intellectual disabilities. She holds a Master’s Degree in Applied Behavior Analysis that serves her well in her position with PWSA (USA).
Stacy has two primary duties;she assists with PWSA (USA)’s public policy advocacy efforts, and she works with families to both support and advocate for people with PWS. If you’ve ever had to call PWSA (USA) for assistance with a concern, there is a chance Stacy was the counselor who helped you. Stacy’s favorite part of her job is working with families affected by PWS and providers.
When not working, Stacy spends her time volunteering with several local youth sports organizations, kickboxing and watching her children play sports.
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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.