PWS advocates returned from EveryLife Foundation for Rare Diseases’s Rare Disease Week on Capitol Hill energized and inspired for the work ahead, especially as we look toward PWSA | USA’s D.C. Fly-In this May. Twenty-two PWS advocates, including four individuals living with Prader-Willi syndrome, gathered on Capitol Hill alongside 800+ other rare disease champions from...
Rare Disease Advocacy in Orlando “On Rare Disease Day, I had the privilege of attending ‘Turning the Page on Prader‑Willi Syndrome’ in Winter Park, FL, to celebrate Dr. Destiny Pacha, an author, PWS education specialist, a friend and a true life‑changer for so many families in the PWS community. Hearing the story that began with...
Contributed by Anne Fricke, mom to Freya (14, living with PWS) I remember when I really began to grasp the concept of intersectionality, though I didn’t have a word for it then. It was years ago in an interview with a special education teacher talking about the school to prison pipeline that affects disabled students...
Contributed by Kelly Guillou On February 3, 2026, the Georgia Association for Prader-Willi Syndrome held an advocacy day at the Georgia State Capitol. The event began with a luncheon in the Capitol building, generously sponsored by Soleno Therapeutics. The luncheon was open to members of the PWS community, state legislators, and their staff. The turnout...
February 3, 2026 Today, the rare disease community has meaningful news to celebrate. Congress has passed legislation that includes a five-year reauthorization of the Rare Pediatric Disease Priority Review Voucher (PRV) Program, increased federal investment in rare disease research, and several additional healthcare provisions that directly impact patients and families living with rare conditions. For...
We are thrilled to share that PWSA | USA has partnered with Soleno Therapeutics on an exciting new awareness initiative that will be featured during this year’s Super Bowl – an ad in the Super Bowl printed program! The powerful message — “No end zone. No final whistle. Just goal posts that keep moving.” — brings...
We’re thrilled to announce the resurgence of our Rare Aware Art Share campaign in 2026! The Rare Aware Art Share will now be an annual project for PWSA | USA. We will be seeking submissions on specific themes in the beginning months of the new year. This year’s theme is in honor of our upcoming...
Soar to new advocacy heights in Washington, D.C.! We are excited to announce the application to attend PWSA | USA’s 3rd D.C. Fly-In, which will take place May 4 – 6, 2026, is now available. This year’s event hotel will be the Yours Truly DC Hotel. During the Fly-In, we will learn about Policy affecting the PWS...
Washington, DC | December 10–11, 2025 PWSA | USA recently participated in the EveryLife Foundation for Rare Diseases’ Community Congress end-of-year convening in Washington, DC. This two-day gathering brought together rare disease advocates, policy experts, and community leaders to reflect on state-level legislative progress in 2025, assess emerging challenges, and begin shaping a coordinated strategy...
Contributed by Dorothea Lantz, PWSA | USA Director of Community Engagement We’re celebrating a monumental victory for the rare disease community! On December 1, 2025, the U.S. House of Representatives passed the Give Kids a Chance Act — a landmark step toward restoring critical pathways for treatments that children with rare diseases and pediatric cancers...
Mark your calendars – the 2026 PWSA | USA D.C. Fly-In will take place May 4-6, 2026, in Washington, D.C., at the Yours Truly DC Hotel! We’re excited to once again bring 150 members of the PWS community, parents, siblings, extended family members, supporters, and most importantly, individuals living with PWS, to Capitol Hill to share...
Families across Wisconsin, especially those caring for loved ones with Prader-Willi syndrome (PWS), depend on reliable access to life-changing medications. But right now, many are facing barriers caused by unfair pharmacy benefit practices that raise costs and limit access to care. That’s why PWSA | USA is urging Wisconsin families to speak up in support...
The Alaska Medical Assistance DUR Committee will be meeting on Friday Nov 21, 2025, at 1 pm AK time. Here’s how you can help: The Alaska Medical Assistance DUR Committee needs to hear directly from you – the parents, caregivers, and family members who understand the real-life impact of hyperphagia (excessive hunger) in PWS. One...
The Iowa Medicaid Pharmaceutical and Therapeutics (P&T) Committee will be meeting on Thursday, November 20, 2025 at 9:30 am CT both virtually and in person. Here’s how you can help: The Iowa Medicaid P&T Committee needs to hear directly from you – the parents, caregivers, and family members who understand the real-life impact of hyperphagia...
The Iowa Medicaid Drug Utilization Review (DUR) Commission will be meeting at 9:30 am CT on November 5, 2025. Here’s how you can help: The Iowa Medicaid DUR Commission needs to hear directly from you – the parents, caregivers, and family members who understand the real-life impact of hyperphagia (excessive hunger) in PWS. One of...
Fifty years ago, on November 29, 1975, the Individuals with Disabilities Education Act (IDEA) was signed into law. This law ensures the rights of individuals with special needs and disabilities to receive a free appropriate public education (FAPE), including our loved ones with Prader-Willi syndrome. Without this law, many, perhaps most, of our loved ones...
The Indiana Medicaid Drug Utilization Review (DUR) Board Meeting will be meeting October 17, 2025, starting at 10:00 AM EST. Here’s how you can help: The Indiana Medicaid DUR Board needs to hear directly from you – the parents, caregivers, and family members who understand the real-life impact of hyperphagia (excessive hunger) in PWS. One...
The Missouri Rare Disease Advisory Council Meeting will be meeting October 8, 2025 from 10:30 AM – 2 PM CDT. Here’s how you can help: The Missouri Rare Disease Advisory Council needs to hear directly from you – the parents, caregivers, and family members who understand the real-life impact of hyperphagia (excessive hunger) in PWS....
Why do P&T Committees and DUR Boards Matter for PWS Treatments? For families living with Prader-Willi syndrome, access to new therapies isn’t just about FDA approval. Once a drug is approved, there’s another critical step that determines whether patients can actually receive treatment: coverage decisions made by Pharmacy & Therapeutics (P&T) Committees and Drug Utilization...
The Alaska Medical Assistance DUR Committee will be meeting virtually at 1 PM AKDT on Friday, Sept. 19, 2025. Here’s how you can help: The Alaska Drug Utilization Review Board needs to hear directly from you – the parents, caregivers, and family members who understand the real-life impact of hyperphagia (excessive hunger) in PWS. One...
The Montana Medicaid Drug Use Review Board will be meeting virtually from 1 PM – 5 PM MT on Wednesday, Sept. 17, 2025. Here’s how you can help: The Medicaid Drug Use Review Board needs to hear directly from you – the parents, caregivers, and family members who understand the real-life impact of hyperphagia (excessive hunger)...
The Minnesota Drug Formulary Committee Meeting will be open at 9 AM CT on Wednesday, Sept. 17, 2025. Here’s how you can help: The Drug Formulary Committee needs to hear directly from you – the parents, caregivers, and family members who understand the real-life impact of hyperphagia (excessive hunger) in PWS. One of the...
The Michigan Pharmacy and Therapeutics Committee will hold a Drug Utilization Review (DUR) Board meeting on September 2, 2025, at 6 PM. Please submit your comment by August 20, 2025. Here’s how you can help: The DUR Board needs to hear directly from you – the parents, caregivers, and family members who understand the real-life...
Rare Across America, sponsored by the EveryLife Foundation for Rare Diseases, is held every August when Congress is on summer recess and our elected officials are in their home districts. It is an opportunity for advocates to meet with their Members of Congress and staff at their in-district offices and educate them on the issues...
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.
