On May 1, 2024, the beginning of PWS Awareness Month, we announced the release of the Voice of the Patient Report. This timely filing marks a significant moment for the Prader-Willi syndrome community! The report gives crucial insights that amplify the perspective of individuals and families affected by PWS and sheds light on aspects of PWS that may not be fully captured in drug trials alone. Integrating the patient’s voice throughout the drug approval process for PWS treatments is essential for the U.S. Food and Drug Administration’s (FDA) comprehensive understanding and impactful decision-making.
The Voice of the Patient Report was created following the June 2023 PWS Externally-Led Patient-Focused Drug Development (EL-PFDD) Meeting and is compiled of testimonials shared during the EL-PFDD meeting, as well as those submitted virtually.
PWSA | USA, FPWR, and IPWSO extend heartfelt gratitude to the entire PWS community for contributing to the success of this project. To truly amplify the patient’s voice, our entire community must commit to ongoing advocacy efforts. This entails incorporating patient perspectives into all facets of processes and systems, ensuring genuine and enduring change. It’s not solely about isolated advocacy initiatives—it’s about steadfast dedication to embracing and elevating the voices of those directly affected by Prader-Willi syndrome.
You can read the Voice of the Patient Report by clicking the button below.
We are excited to share that several new community members are in the beginning stages of having PWS added to their state’s list of developmental disabilities.
If you or someone you know is interested in leading the charge in your state, please email PWSA | USA at Advocacy@pwsausa.org.
Your voice made a difference! PWS’s First Externally Led Patient-Focused Drug Development Meeting was a success. We have officially filed the Voice of the Patient Report, which is a document put together to include the stories shared during the meeting and submitted virtually. Click the button below to find the report and to learn more about the EL-PFDD.
In a powerful week of advocacy, Dorothea Lantz, Director of Community Engagement at PWSA | USA, represented Prader-Willi syndrome (PWS) on Capitol Hill and at the 2024 NORD Breakthrough Summit in Washington, D.C., from October 20–22. The Summit gathered leaders across the rare disease community, including patient advocates, healthcare providers, researchers, and policymakers, all united […]
This week, members of PWSA | USA’s Adults with Prader-Willi Syndrome (PWS) Advisory Board gathered in Phoenix, Arizona, for a multi-day meeting to discuss upcoming initiatives and programs. Among the key topics was planning for the Adults with PWS Conference, a half-day event that will take place during the 2025 International PWS Conference on June […]
In a powerful demonstration of community advocacy, several members of the Prader-Willi syndrome (PWS) community recently met with Representative Angie Craig (D-MN) to share their stories and advocate for those living with PWS. This meeting in Minnesota, which was scheduled as a follow-up to PWSA | USA’s 2024 D.C. Fly-In, highlighted the importance of ongoing […]
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PWSA | USA
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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.
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.
