Question: Female, 22 years old, Deletion subtype My daughter is not sleeping…day or night. She sleeps maybe 2 hours at night and no naps. That means I don’t sleep. We have tried OTC and Ambien, and they don’t work. We need help, I am emotionally and physically exhausted. I will reach out to her psychiatrist...
The Professional Providers Advisory Board (PPAB)—often referred to as the Residential Advisory Board—gives voice to those who support adults and children with PWS in residential settings. Their daily work ensures that quality care, dignity, and autonomy are realities for individuals with PWS. Just as early pioneers forged paths in residential care, today’s PPAB members build...
Question: Male, 43 years old, Deletion subtype Our 43-year-old PWS son has become addicted to nicotine which has become more important than food. He knows he will be fed but we restrict his access to vaping (his favorite) which leads him to all kinds of ways of getting it out of our control. So far,...
submitted by Stacy Ward, PWSA | USA CEO Each year, during National Direct Support Professional Week (September 7-13, 2025), we pause to celebrate the incredible individuals who dedicate their careers to supporting people with disabilities. At PWSA | USA, we know firsthand how essential these professionals are to the lives of children and adults living...
Many of our families are blessed to have grandparents in their lives. Some grandparents live close by and are able to help with the practicalities of raising someone with PWS, like doctor appointments, therpay visits, and babysitting or supervising so the main caergivers can have a break. Other parents live far away but find those...
Soleno Therapeutics has released a statement to the PWS community regarding VYKAT™ XR (diazoxide choline) extended-release tablets, the first and only FDA-approved treatment for patients 4 years and older to address hyperphagia in Prader-Willi syndrome. In their message, Soleno reaffirms their commitment to safety, transparency, and partnership with the PWS community as VYKAT XR becomes...
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)...
Question: Male, 23 years old, unknown subtype I have PWS. I’m 23, 5’7″. I do not have diabetes, but my grandfather and dad do. I was wondering what my blood sugar should be every day. I just got a glucose monitor so I want to make sure I’m doing good. I do workout every single...
Contributed by PWSA | USA CEO Stacy Ward, MS, BCBA When you are raising or caring for someone with PWS the journey can feel overwhelming. What makes it a little lighter is knowing there are incredible clinicians, researchers, and specialists who have chosen to walk this road with us. At the heart of PWSA |...
Since our founding in 1975, Prader-Willi Syndrome Association | USA (PWSA | USA) has been more than an organization. We have been a trusted voice, advocate, and lifeline for families and individuals affected by Prader-Willi syndrome. Just as our mission has grown and adapted to meet the needs of our community, our logo and tagline...
Question: Female, 18 months old, UPD subtype My 18 month old daughter with PWS will be going in for tonsil shaving / possible adenoid removal in 2 weeks and this will be her first time under anesthesia for a procedure. The ENT performing the procedure is knowledgeable about PWS as he belongs to our PWS...
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...
submitted by Melanie Zalman Donna Stephens, grandmother to Samuel (living with PWS) has volunteered with PWSA the last several years! She attended the 2023 DC Fly-In as a PWS grandparent advocate and has met with elected officials representing Louisiana. She was an integral part of our recent 2025 International PWS Conference in Phoenix, AZ, making...
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...
Question: Female, 67 years old, Deletion subtype My sister with PWS (very high functioning) is scheduled for her first colonoscopy. It is just routine and there is no family history of colorectal cancer. Is this procedure absolutely necessary? Any additional advice or recommendations if the procedure is necessary. Nurse Lynn’s Response: Routine colon cancer screening...
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...
submitted anonymously No one tells you that the moment your child receives a life altering diagnosis your entire world shifts, including your marriage. Raising a child with a disability is beautiful, powerful, and deeply meaningful, but it’s also exhausting, emotional, and never ending. For many families, the stress and pressure don’t just challenge the child,...
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...
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...
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.
