Hosted by PWS Mom Michele Hampton Join us for the inaugural Dance Silly for Prader-Willi event—a lively celebration to support the Prader-Willi Syndrome Association USA! This special occasion honors our daughter Jayda’s journey with PWS and the invaluable support we've received from this incredible organization. Get ready for a FUN, FAMILY, DANCE PARTY like no […]
Hosted by PWS Mom Michelle Spring Please join us at the 4th Annual (Trivia) Answers for Audrey event on Saturday, October 12th, 2024 at the Incarnate Word Academy (2788 Normandy Dr, Bel-Nor, MO, United States, Missouri)! Doors open at 6:30 pm and trivia starts at 7:00 pm. Our daughter, Audrey Rose, was diagnosed with Prader-Willi […]
Join PWSA | USA for our October ECHO 4 PWS Webinar, Psychiatry and PWS with Deepan Singh, MD, on October 24, 2024, at 12:00 p.m. EST. More details coming soon! REGISTER IN ADVANCE HERE PWSA | USA launched our Health Care Provider Project ECHO Series, ECHO 4 PWS, in 2023. We are proud to offer this […]
CLICK HERE TO MAKE YOUR GIFT OF HOPE! As we approach the end of 2024, we are filled with gratitude for your unwavering support. This year has been a time of innovation and growth for the Prader-Willi Syndrome Association | USA (PWSA | USA), and it’s all thanks to your engagement and generosity Sharing and […]
Join PWSA | USA for our November ECHO 4 PWS Webinar, Exercise Physiology with Dr. Daniela Rubin. More details coming soon! REGISTER IN ADVANCE HERE PWSA | USA launched our Health Care Provider Project ECHO Series, ECHO 4 PWS, in 2023. We are proud to offer this opportunity to health care professionals who work with patients […]
CLICK HERE TO REGISTER When: Tuesday, November 19, 2024 | 5 pm PST / 8 pm EST This live webinar, facilitated by Lisa Graziano, M.A. LMFT, will help your babysitter, respite worker, and even relatives better understand how to care for your child or adult more safely, giving YOU greater opportunity to enjoy date nights, […]
When: Saturday, February 1, 2025 | 5:30 pm Where: Poe's on the Hill, Springfield, IL CLICK HERE TO PURCHASE TICKETS Join Team Esme for an Unforgettable Evening of Fun and Fundraising! Get ready for a night of delicious food, lively dancing, and exciting entertainment. DJ Chad Burton will keep the energy high throughout the evening. […]
Rare but strong. Rare but resilient. Rare but never alone. This Rare Disease Day (Friday, February 28, 2025), we’re standing with the Prader-Willi syndrome community and the 30 million Americans living with a rare disease. Whether you’re sharing your story, spreading awareness, or fundraising for a brighter future, YOU can make a difference. Download our […]
We invite the PWS community to join us for a FREE and important webinar with Harmony Biosciences on Tuesday, March 11, 2025, at 5:00 PM PST / 8:00 PM EST on Zoom! CLICK HERE TO REGISTER This is your chance to: - Learn about the TEMPO Phase 3 clinical trial of pitolisant, a potential treatment for […]
Sip, Savor, Support! Join Clint and Karla Hurdle on Saturday, March 22, 2025, to support PWSA | USA. Enjoy the 11th Annual Hot Stove Dinner at this outdoor event on the beautiful grounds of Bradenton Country Club, Bradenton, FL, or virtually from anywhere. REGISTER HERE! Event Schedule: 5:00 PM EST - 6:00 PM EST | […]
When: Saturday, April 5, 2025 | 6:00 PM Where: Historical Hall (608 Old Post Road, Bedford NY) CLICK HERE TO REGISTER AND BECOME AN EVENT SPONSOR Join us for the inaugural Zahra’s Night of Light at the Historic Hall in Bedford, NY! This community event brings us together to support children like Zahra, living with Prader-Willi Syndrome. […]
Date: Wednesday, April 16, 2025Time: 9:15 AM PT | 12:15 PM ETLocation: Virtual via ZOOM Free for anyone to attend REGISTER HERE 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 […]
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.
