The 2026 Angel Drive (November 1 to December 31) is PWSA | USA’s largest annual fundraising campaign, dedicated to bringing hope and essential support to families and individuals impacted by Prader-Willi syndrome. Click Here to Make an impact! Everyone connected to Prader-Willi syndrome can remember a moment when support, information, encouragement, or simply knowing someone...
Soleno Therapeutics, a Neurocrine Biosciences Company, is pleased to invite our community to a FREE Prader-Willi Syndrome (PWS) Community Day in Chicago taking place on Saturday, Oct 17th at the Kohl Children’s Museum (2100 Patriot Boulevard, Glenview, IL 60026) for a day of education and connection. The planned sessions will take place between 12:30-4pm CT. There will be...
Want to send a special message to your loved one over the PWS United airwaves? Perhaps a “happy birthday” or “congratulations” would make your loved one’s day. If you’d like to share a brief shout-out for your loved one with PWS, a caregiver, teacher, or someone who works closely with your loved one, fill out...
At PWSA | USA, our mission is to enhance the quality of life and empower individuals living with Prader-Willi syndrome, and achieving that mission takes a strong network of professionals, caregivers, and organizations working together. That collaborative spirit was on full display August 20–22, 2026, when more than 100 residential professionals from across the country...
We are thrilled to officially kick off registration for PWSA | USA’s 39th United in Hope National PWS Convention, taking place July 14-17, 2027, at the beautiful Caribe Royale Orlando in Orlando, Florida. Our biennial convention is more than an event. It’s a powerful reminder of what makes this community so special. Hundreds of families...
Every two years, individuals living with Prader-Willi syndrome (PWS), their family members, and supporters do something remarkable. They pack their bags, book their flights, and travel to Washington, D.C. to make sure the voices of our rare community are heard where it matters most. This May, that tradition reached new heights. PWSA | USA’s 3rd...
As we prepare for the 12th Annual Hot Stove Dinner, happening Saturday, March 21, 2026, at the Bradenton Country Club in Bradenton, FL, and online for virtual guests, event host Clint Hurdle takes us on a journey through the event’s history. Originally shared with PWSA | USA in 2022, Clint’s heartfelt reflection, A Legacy of...
Note: This event is hosted by Soleno Therapeutics and shared by PWSA | USA as an educational opportunity for the Prader-Willi syndrome (PWS) community. Families, caregivers, and professionals are invited to join Soleno Therapeutics for an upcoming educational webinar discussing Prader-Willi syndrome and VYKAT™ XR (diazoxide choline), a treatment for individuals 4 years and older...
On Friday, September 26, 2025, nearly 200 members of the Prader-Willi syndrome community gathered from across the country at The Ritz-Carlton, St. Louis to celebrate a milestone half a century in the making. Our 50th Anniversary Journey of Hope Gala was nothing short of extraordinary. It was a night filled with connection, laughter, legacy, and...
This year, as PWSA | USA celebrates 50 years of hope, advocacy, and impact, we’re proud to recognize the pioneers and visionaries who helped lead the way. In the months leading up to our Journey of Hope Gala in St. Louis, MO, we will be sharing a series of blog spotlights to honor the 12 incredible individuals being recognized...
This year, as PWSA | USA celebrates 50 years of hope, advocacy, and impact, we’re proud to recognize the pioneers and visionaries who helped lead the way. In the months leading up to our Journey of Hope Gala in St. Louis, MO, we will be sharing a series of blog spotlights to honor the 12 incredible individuals being recognized...
This year, as PWSA | USA celebrates 50 years of hope, advocacy, and impact, we’re proud to recognize the pioneers and visionaries who helped lead the way. In the months leading up to our Journey of Hope Gala in St. Louis, MO, we will be sharing a series of blog spotlights to honor the 12 incredible individuals being recognized...
This year, as PWSA | USA celebrates 50 years of hope, advocacy, and impact, we’re proud to recognize the pioneers and visionaries who helped lead the way. In the months leading up to our Journey of Hope Gala in St. Louis, MO, we will be sharing a series of blog spotlights to honor the 12 incredible individuals being recognized...
This year, as PWSA | USA celebrates 50 years of hope, advocacy, and impact, we’re proud to recognize the pioneers and visionaries who helped lead the way. In the months leading up to our Journey of Hope Gala in St. Louis, MO, we will be sharing a series of blog spotlights to honor the 12 incredible individuals being recognized...
This year, as PWSA | USA celebrates 50 years of hope, advocacy, and impact, we’re proud to recognize the pioneers and visionaries who helped lead the way. In the months leading up to our Journey of Hope Gala in St. Louis, MO, we will be sharing a series of blog spotlights to honor the 12 incredible individuals being recognized...
For more than three decades, Dr. Moris Angulo, MD, has been a tireless champion for people with Prader-Willi syndrome (PWS), in exam rooms, at conferences, across continents, and in the hearts of the families he serves. Born in the small town of El Tránsito, El Salvador, Dr. Angulo’s journey to becoming a board-certified pediatrician, medical...
This year, as PWSA | USA celebrates 50 years of hope, advocacy, and impact, we’re proud to recognize the pioneers and visionaries who helped lead the way. In the months leading up to our Journey of Hope Gala in St. Louis, MO, we will be sharing a series of blog spotlights to honor the 12 incredible individuals being recognized...
This year, as PWSA | USA celebrates 50 years of hope, advocacy, and impact, we’re proud to recognize the pioneers and visionaries who helped lead the way. In the months leading up to our Journey of Hope Gala in St. Louis, MO, we will be sharing a series of blog spotlights to honor the 12 incredible individuals being recognized...
This year, as PWSA | USA celebrates 50 years of hope, advocacy, and impact, we’re proud to recognize the pioneers and visionaries who helped lead the way. In the months leading up to our Journey of Hope Gala in St. Louis, MO, we will be sharing a series of blog spotlights to honor the 12...
Here’s Your Next Opportunity to Gather Together In-Person with the PWS Community! Celebrate PWSA | USA’s 50th Anniversary in St. Louis, MO Learn More and Purchase Gala Tickets After experiencing an amazing time together in Phoenix at the United in Hope International PWS Conference, we’re reminded how meaningful it is to gather in person –...
What a night! On April 3rd, the Dorson Family, Pia, Dave, Zahra, Ronin, and Zoe, hosted the inaugural Zahra’s Night of Light at the Historic Hall in Bedford, NY. The evening brought together family and friends for a beautiful celebration benefiting children like Zahra who are living with Prader-Willi syndrome. Guests enjoyed live entertainment, delicious...
Date: Wednesday, April 16, 2025Time: 9:15 AM PT | 12:15 PM ETLocation: Virtual via ZOOM The Prader-Willi syndrome (PWS) community has reached a historic milestone – VYKAT XR (formerly known as DCCR in clinical trials) is now FDA-approved as the first-ever treatment for hyperphagia in PWS. To help families, caregivers, and healthcare providers understand what...
May is Prader-Willi Syndrome (PWS) Awareness Month—a time to amplify voices, celebrate resilience, and rally support for those affected by PWS. This year, we’re launching United We Brunch, a nationwide movement bringing people together to raise awareness and strengthen our community. Whether it’s a small gathering or a large event, every brunch hosted across the...
As the calendar turns to 2025, we at Prader-Willi Syndrome Association | USA (PWSA | USA) are filled with gratitude and anticipation. This year marks a monumental milestone: 50 years of supporting individuals with Prader-Willi syndrome (PWS) and their families through advocacy, education, research opportunities, and compassion. Our story began in 1975, when Gene and...
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.
