Some of our volunteers are front and center at events and fundraisers, speaking from podiums, in legislative offices, and with local news station. Other volunteers are there for the quieter moments, pouring the proverbial cup of tea for new families or showing up to work group meetings to help clarify the path of this organization. ...
Board of Directors Member: Marguerite Rupnow, MBABoard Role: ChairYears on the Board: 11 What first connected you to the Prader-Willi syndrome community, and what inspired you to join the PWSA | USA Board of Directors? I have worked with individuals with Prader-Willi syndrome (PWS) for 38 years, dedicating the past 24 years exclusively to my...
We at PWSA | USA are incredibly grateful to our volunteers. These wonderful volunteers show up in a variety of capacities to help us carry out our mission to “enhance the quality of life of and empower those affected by Prader-Willi syndrome.” Some are older parents well-versed in the intricacies of the PWS community. Some...
Submitted by Melanie Zalman, PWSA | USA’s Director of Development and mom to Josephine (living with PWS) Dan reached out at the time his nephew “Maverick” was born with PWS. Dan’s brother and sister-in-law live with Maverick in Arizona. Dan basically said, I’m eager to help the community in any way I can. I have...
If you’ve ever received a New Diagnosis Care Package from PWSA | USA, there’s a good chance it was carefully prepared by Ella Frazier. Ella is the sister of Joseph (JoJo), who lives with Prader-Willi syndrome, and from the very beginning, she has played an important role in his journey. Her care and compassion shine...
At PWSA | USA, we are consistently impressed with how our families show up in support and spread awareness of our rare disease. Whether we’re speaking in a small town classroom or presenting from podiums on a national stage, every presentation, every shared pamphlet, every question answered, brings more awareness and safety for our loved...
submitted by Melanie Zalman Donna Stephens, grandmother to Samuel (living with PWS) has volunteered with PWSA the last several years! She attended the 2023 DC Fly-In as a PWS grandparent advocate and has met with elected officials representing Louisiana. She was an integral part of our recent 2025 International PWS Conference in Phoenix, AZ, making...
Submitted by Carrie Ilijevich, PWSA | USA Marketing & Communications Director If you’ve been to a PWSA | USA event in the last few years, there’s a good chance you’ve seen (and maybe even posed in front of) something incredible that Melissa Rivas created. Melissa is not only an amazing mom to 7-year-old Sofia, who...
submitted by Stacy Ward Sybil Cohen has been a dedicated volunteer for PWSA | USA for many years, serving in numerous vital roles including chapter leader, board member, and parent mentor. Her unwavering commitment was especially evident at the recent United in Hope Conference, where she volunteered at the registration and check-in desk for the...
submitted by Stacy Ward This spotlight is in recognition of Diane Larsen, mom to Carrie Ilijevich (Director of Marketing/Communications at PWSA | USA.) Diane has volunteered countless hours for PWSA | USA’s convention in 2023 and the most recent United In Hope International PWS Conference. Although Diane has no personal connection to the Prader-Willi syndrome...
Submitted by Stacy Ward Michelle Torbert, mom to Leslie, living with PWS, has been a dedicated volunteer with PWSA | USA for more than 20 years. She has led the Florida Chapter, served as a Board of Directors member, and held the position of Board Chair for several years. If there’s a committee or workgroup,...
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.
Past president of the Education Law Association and co-chair of the Pennsylvania special education appeals panel from 1990 to 2007, he is the author of the CEC monograph The Legal Meaning of Specific Learning Disability; the more recently published books, A Digest of Supreme Court Decisions Affecting Education and Student Teaching and the Law; and the two-volume reference Section 504, the ADA and theSchools, now in its fourth edition. In 2012, he received Research into Practice Award from the American Educational Research Association (AERA) and the Excellence in Research Award from AERA’s Division A (Administration, Organization & Leadership). In 2013, he received the University Council for Educational Administration’s Edwin Bridges award for significant contributions to the preparation and development of school leaders. In 2016, he received the Education Law Association’s Steven S. Goldberg Award for Distinguished Scholarship in Education Law, and in 2017 he received the Council for Exceptional Children’s Special Education Research Award. Note:Perry’s website is perryzirkel.com
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.
Over the years, as a special-needs parent navigating the Special Education system for Sophie, Jennifer became interested in learning as much as possible about that process. She began by attending PWSA (USA)’s first Wyatt Special Education Advocacy Training in March of 2013, and went on to complete a rigorous 9-month Special Education Advocacy Training course with the Council of Parent Advocates and Attorneys in May of 2015. This included successfully completing an advocacy internship with PWSA (USA). Jennifer is referred school cases by PWSA (USA)’s Family Support Counselors, and then works closely with parents and schools to review education records, assess the child’s situation at school, provide further information about how the syndrome affects the school experience, and, as needed, create improved IEPs and behavioral plans. Jennifer was excited to take on this role of helping parents in the PWS community to work collaboratively with school professionals and parents to create positive, effective learning environments for children with PWS across the country. Jennifer is a graduate of the WSEAT program.
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.
She obtained her PhD from Capella University in Education focusing her research on Prader-Willi Syndrome. Dr. McTighe is also a graduate of the William & Mary Law School’s Institute for Special Education Advocacy. Dr. McTighe is currently the chair of the Special Education Advisory Board for the Prader-Willi Syndrome Association-(USA). Amy is the Chair of PWSA (USA)’s Special Education Advisory Board.
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.
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.
Staci Zimmerman has lived in Denver, CO for the past 17 years. She lives with her husband and 5 year old daughter. Staci attended The University of Kansas, with a B.A in sociology and an M.ed in Special Education, with an emphasis in Autism Spectrum Disorder. Staci enjoys teaching fitness classes, and keeping a healthy, active lifestyle in Colorado.
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.
Before founding SDLC, Jim was the Executive Director of Advocacy, Inc., the Texas Protection and Advocacy program from 1989-2001. During that period, he managed the growth of the program from 34 staff to a staff of 94 and from a centralized operation with one office to a regionalized operation with eleven offices spread across Texas.
From 1981-1989, Jim worked for the Advocacy Center for the Elderly and Disabled (Louisiana’s Protection and Advocacy program) as its Legal Director. From 1979 to 1981 Jim worked as a staff attorney for the Louisiana Center for the Public Interest.
Jim graduated from Tulane University School of Law in 1977, and has a BA in Accounting & Economics from the University of Puget Sound.
Jim is the author of publications and training materials on the IDEA, the ADA, and Section 504, including: Keeping Students with Disabilities in School: Legal Strategies and Effective Educational Practices for Preventing the Suspension of Students with Disabilities – A Resource Manual (2014); Stopping the Schoolhouse to Jailhouse Pipeline by Enforcing Federal Special Education Laws (2006), co–authored with Rhonda Brownstein from the Southern Poverty Law Center.
Jim has served as lead or co-counsel in several major IDEA actions in Texas, Louisiana, and Mississippi on behalf of thousands of students with disabilities, including Angel G. v. Texas Education Agency; Luke S. v. Louisiana Department of Education and Mattie T. v. Mississippi Department of Education. The past decade, he also filed and favorably settled five systemic administrative complaints in Louisiana, Mississippi, and Florida. These systemic complaints were filed under IDEA’s state complaint procedures.
Jim has also made over two hundred presentations at statewide, regional and national conferences on IDEA, Section 504, and ADA issues. The past four years he has also served as one of the faculty members at William and Mary Law School’s week long Institute on Special Education Advocacy.
