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...
submitted by Amy McDougall, mom to Noelle (23, living with PWS) For years, I personally found it difficult to consider my own self-care. As a caregiver in a household that included PWS and other medical needs, I was focused on meeting my family’s needs, while ignoring my husband’s encouragement to care for myself. When I...
Thanks to the incredible generosity of an anonymous donor, PWSA | USA is thrilled to bring back Operation Holiday Cheer for 2025! This heartwarming initiative helps spread joy to families in need by easing the financial burden of the holiday season. Through this program, a select number of families affected by Prader-Willi syndrome will receive gift...
Question: Female, 18 years old, Deletion subtype If my child becomes constipated, can we use Miralax to help it to flow better? Nurse Lynn’s Response: Constipation is very common in adults with PWS because of slower gut movement, low muscle tone, and limited activity. Managing it usually takes a mix of daily habits and medications....
The 2025 Angel Drive (November 1 – 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. This year, your gift is especially meaningful as we celebrate PWSA | USA’s 50th Anniversary. Now more than ever, your support fuels our forward...
November is National Family Caregivers Month, a great opportunity for our community to reflect, discuss, and take action on caring for our caregivers. Family caregivers are the parents, grandparents, siblings, and other family members who care for individuals with PWS in the home. Family caregivers are recognized for their incredible care, dedication, time, and often...
Question: Male, 17 years old, unknown subtype What are your thoughts on Risperidone? My son has been on Abilify for over 3 years but is now starting to become more agitated as time goes on. The Doctor is suggesting Risperidone to help his extreme impulsive outburst about very small things that he is dealing with....
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...
contributed by Stacy Ward, PWSA | USA CEO On October 18, we gathered in the Malt Room at Brown’s Brewing Company in Troy, NY for an unforgettable evening: Cocktails for a Cause: A Night for Prader-Willi Syndrome. It was a night filled with music, laughter, and a few heartfelt tears — but most importantly, it...
Question: Female, 40 years old, deletion subtype Can a woman with PWS have a baby? Nurse Lynn’s Response: Most women with PWS cannot have babies because their bodies don’t make enough of the hormones needed for regular periods and pregnancy. But there have been a few rare cases where women with PWS have gotten pregnant...
October 1-4, 2025, PWSA Egypt and the Middle East held their first ever PWS event in the heart of Egypt. Thanks to a grant from Friends of IPWSO, the Nile Hope Workshop and Camp was able to host over 120 people (30 families) from across the Arab world, both virtually and in-person, for an incredibly...
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...
On Saturday, October 11, 2025, families and friends gathered at the Trumbull Career and Technical Center in Warren, Ohio, for the 2nd Annual Dance Silly for Prader-Willi, a festive Halloween-themed fundraiser hosted by Michele Hampton and her family. For Michele, whose three-year-old daughter Jayda is living with Prader-Willi syndrome (PWS), Dance Silly for Prader-Willi is...
PWSA | USA is excited to celebrate a powerful new commitment from Soleno Therapeutics, a company already making history in the Prader-Willi syndrome (PWS) community. Following the FDA approval of VYKAT™ XR (diazoxide choline extended-release tablets), the first-ever treatment for hyperphagia in PWS, Soleno has announced plans to invest up to $5 million in grant...
Question: Male, 40 years old, Deletion subtype My son turned 40 in Dec 2025. I feel his memory is getting shorter. Forgetting a lot. Also, talking to himself. He never really did this, but it seems to be doing it a lot lately. Is this normal for adults. We are going to his primary soon....
Question: Male, 18 years old, Deletion subtype My son has low testosterone and is seeing an endocrinologist tomorrow to possibly start increasing this hormone. Is there anything I should look out for? He is at a good weight but has low energy. The primary doctor believes it could be because of the low testosterone. Any...
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...
submitted by Anne Fricke, mom to Freya (13, living with PWS) October is National Bullying Prevention Month. One of the frustrating and sad realities of our society is that individuals with disabilities and special needs are more likely to be bullied, including our loved ones with PWS. It is essential that we, as parents and...
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...
Earlier this year, Aardvark Therapeutics launched HERO, a global Phase 3 clinical trial investigating ARD-101, an innovative, orally administered treatment designed to help reduce hyperphagia (excessive hunger) and food-seeking behaviors in individuals with Prader-Willi syndrome (PWS). All patients who have completed treatment on the AVK-101-301 study through Week 12/End of Treatment will have the option to join...
Question: Female, 13 years old, Deletion subtype My daughter started the estradiol patch about 4 months ago. She hasn’t really gained much weight or gotten bigger, but she is getting stretch marks across her butt and her upper thighs. Is this common with estrogen spikes or does it have something to do with PWS? Is...
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...
On Wednesday, September 24, 2025, Acadia Pharmaceuticals shared an update on their Phase 3 COMPASS PWS trial, which evaluated intranasal carbetocin (ACP-101) for hyperphagia (excessive hunger) in children and adults with Prader-Willi syndrome (PWS). The trial did not meet its primary endpoint of improving scores on the Hyperphagia Questionnaire for Clinical Trials (HQ-CT) from baseline...
Question: Female, 69 years old, unknown subtype I am guardian for my sister who will be 69! It’s been a rough road for my parents since there was little knowledge about PWS. She currently lives with a SLP caregiver and they are a Godsend. While she has a host of typical PW physical challenges, the...
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.
