We are deeply grateful to every family, individual, caregiver, professional, researcher, and supporter who took time out of your busy lives, traveled from near and far, and helped make the United in Hope International PWS Conference in Phoenix the most impactful gathering our community has ever seen.
This was truly a historic milestone. For the first time ever, the three leading PWS organizations – the International Prader-Willi Syndrome Organisation (IPWSO), the Foundation for Prader-Willi Research (FPWR), and Prader-Willi Syndrome Association | USA (PWSA | USA) – came together to host a single, united global event. Together, we welcomed a record-breaking 1,330 attendees, which is the largest turnout in each organization’s history!
We invite you to scroll below to revisit the moments and memories from this week-long event. You’ll find the impact in numbers, browse our photo gallery, view the Family Program main ballroom sessions, and read what this conference meant to the community.
Thank you for organizing this. The energy around was so hopeful, from other families, doctors, and sponsors. It can feel so lonely when a diagnosis is delivered and is thought about purely clinically. Thank you for the hope.
– Louisa D.
It was a great family experience. We have more tools and knowledge of PWS that definitely will help us to improve our management with our PWS son.
– Cristina M.
It was such an amazing conference. It was very informative, and the breakout sessions offered great topics. It felt like a big family reunion, getting to see and catch up with our PWS families. Thank you for everything!!
– Katina W.
The highlight of my experience was the feeling of Unity and Hope. We all know the struggles and worries – but I left with a real feeling of all the possibilities.
– Jill K.
This was a truly exceptional conference. I have attended several others professionally, and can attest to the high quality of this conference from content to logistics to experience. Really well done.
– Tom R.
Super grateful for the conference and the people and families we connected with. Very educational, informative, and productive. I know Catalina enjoyed spending time with Dr. Miller, too, so I’m grateful she was there.
– Dominique V.
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 […]
We can’t overstate this enough – thank you. We are grateful to every family, individual, caregiver, professional, researcher, and supporter who took time out of your busy lives, traveled from near and far, and made the United in Hope International PWS Conference in Phoenix the most unforgettable gathering we’ve ever experienced. This was a historic […]
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PWSA | USA
1032 E Brandon BLVD #4744
Sarasota, FL 33511
Phone: (941) 312-0400
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.
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
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.
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.
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.
