CLICK HERE TO PURCHASE TICKETS AND LEARN MORE Join us for the 2nd annual 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 other! Set […]
CLICK HERE TO PURCHASE TICKETS AND LEARN MORE Join us for an unforgettable evening of support, hope, and community. Hosted at the scenic and historic Brown’s Brewing Company Malt Room, this event will bring together families, friends, and supporters for an inspiring evening of cocktails, conversation, and compassion, all aimed at raising awareness and funds […]
We’re thrilled to invite you to an evening of fun, community, and purpose at the 5th Annual Answers for Audrey Trivia Night. Can you believe it’s already Year 5? Our daughter, Audrey Rose, was diagnosed with Prader-Willi Syndrome (PWS) on December 19, 2020. PWS is a rare genetic disorder caused by a missing segment on chromosome 15, affecting approximately 1 in 25,000 […]
CLICK HERE TO LEARN MORE AND PURCHASE TICKETS! When: Wednesday, October 22, 2025 Doors open at 5:00 PM | Show starts at 7:30 PM Where: Zanies Comedy Club Nashville (2025 8th Ave S, Nashville, TN 37204) Hey Nashville! it’s time to laugh in rare form. On Wednesday, October 22, 2025, the iconic Zanies Comedy Club […]
Give the Gift of Hope this Holiday Season! CLICK HERE TO MAKE AN IMPACT Visit the Angel Drive Hub The 2025 Angel Drive is PWSA | USA’s largest annual fundraising campaign, dedicated to bringing hope and essential support to families and individuals impacted by Prader-Willi syndrome (PWS). This year, your gift is especially meaningful as we celebrate […]
VISIT EVENT PAGE The name of this event is inspired by Áine's frequent wearing of a myriad of adorable bows but is also about taking a bow, as this is a concert fundraiser. Irene Moretto ("Mamma" of Áine) and Kaitlyn Waterson will perform musical selections for piano and voice centered around the wondrous and awe-filled experiences of infancy, childhood, […]
VISIT EVENT PAGE Join us for Claus for a Cause on Sunday, December 7th from 12-4 PM at the Bridgeville VFD Station 117 in Bridgeville, PA.This community event brings us together to support children living with Prader-Willi Syndrome. This family-friendly celebration includes pictures with Santa, a healthy meal and kid-friendly seasonal activities. We are a dedicated […]
When: Tuesday, January 27 @ 8pm ET | 5pm PT Where: ZOOM REGISTER HERE Want to know how we can improve outcomes for more people in our PWS Community? Come join the Colors of Hope group as they present findings from a series of Listening Sessions and surveys with the families of color affected by […]
When: Thursday, January 29, 2026 @ 12 – 1pm ET REGISTER HERE Sleep challenges are a real — and often misunderstood — part of life with Prader-Willi syndrome. Join TREND Community for "Shedding Light on Sleep Disorders in Prader-Willi Syndrome," a webinar centered on caregiver experiences and clinical insight, with a focus on listening, learning, […]
When: Thursday, January 29 @ 7:30 - 9pm ET | 4:30 - 6pm PT REGISTER HERE In 2026, Soleno Therapeutics, the makers of VYKAT XR will be hosting a series of caregiver webinars. Each webinar will have a mini-theme related to important moments in the PWS community. On January 29, the webinar will review the signs […]
Rare Disease Day is a global movement to raise awareness and advocate for the more than 300 million people worldwide living with a rare disease. Held annually on the last day of February, this day unites individuals, families, organizations, and communities to shine a light on the challenges of rare diseases and the urgent need for research, […]
Families in the PWS community are invited to attend a PWS Community Day on Rare Disease Day (Saturday, February 28th) in Durham, NC! This event, hosted by Soleno Therapeutics in collaboration with PWSA | USA and FPWR, will take place at The Museum of Life and Science (433 W. Murray Avenue, Durham, NC 27704) from […]
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.
