TREND Community released its latest report on Anxiety and PWS. The dataset is drawn from conversations within PWS Connect, a private Discord community launched in April 2024. The community is made up primarily of caregivers of children and individuals living with PWS. At the time of this analysis, PWS Connect included 157 members and 2,034...
Question: Male, 39 years old, unknown subtype My son is 39 and has Type II diabetes. We had it under control with diet, and prescriptions for Metformin, Actos, Januvia, &Jardiance. He is overweight. In December 2024 a new endocrinologist took him off of Januvia and Actos and put him on Trulicity. When we couldn’t get...
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...
contributed by Kat Lucero, mom to Ronan (living with PWS) and PWSA | USA Board Member I think the day I discovered that Ronan had scoliosis was one of the saddest and most eye-opening days of my journey as his mom.It was the moment I realized that I couldn’t protect him from everything Prader-Willi syndrome...
Question: Female, 14 years old, unknown subtype Does the hunger come with anxiety? What kind of medication is helpful? Nurse Lynn’s Response: Anxiety and food worries are very common PWS. First, I want to say that I am not a physician or a prescriber, but I can share information that may help you talk with...
The information below is taken from our booklet, “Therapeutic Interventions for the Child with Prader Willi-Syndrome”, written by: Janice Agarwal, PT, CNDT, along with some edited quotes from an upcoming PWS United podcast episode with Janice Agarwal and Abbie Ogilbee, PT, DPT. Be sure to read the full details on specific strategies or activities in...
The information below is taken from our booklet, “Therapeutic Interventions for the Child with Prader Willi-Syndrome”, written by: Janice Agarwal, PT, CNDT, along with some edited quotes from an upcoming PWS United podcast episode with Janice Agarwal and Abbie Ogilbee, PT, DPT. Be sure to read the full details on specific strategies or activities in...
Question: Female, 15 years old, deletion subtype My daughter never wants to wipe herself around her back. Her underwear is stained most of the time. I always have to remind her to wipe. Sometimes she gets frustrated because she doesn’t want to do it and then she has this odor. You can tell that she’s...
Children, and many adults, look forward to Halloween with great anticipation. Bags full of sugary treats, scary decorations, and the thrill of trick or treating with friends and family: what could be more fun? But what do you do for Halloween when your loved one has Prader-Willi syndrome? Can they safely participate in the festivities?...
Board of Directors Member: Kathryn LuceroBoard Role: MemberYears on the Board: 4.5 What first connected you to the Prader-Willi syndrome community, and what inspired you to join the PWSA | USA Board of Directors? My first connection with the Prader-Willi community was in 2014, when my son, Ronan, was born. My mom initially reached out...
Question: Female, 37 years old, deletion subtype Lately our daughter has been slowly and absent-mindedly pulling out her hair a few strands at a time and eating it to the point that she’s developed very large bald spots—and it has also caused severe constipation. We seemed to have solved the latter for now with our...
contributed by Nicole Tingley, BA, QIDP, LNHA Being a Direct Support Professional is so much more than a job. To me, it is a privilege. We serve a population that is often forgotten or underestimated. Being invited into someone’s home and trusted to be part of their everyday life is something I don’t take lightly....
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...
contributed by PWSA | USA Advocacy Specialist Elaine Towle, mom to James (40, with PWS) Global Genes is a rare disease advocacy organization that supports patients, caregivers, researchers, and advocates around the world through education, data platforms, patient services, research resources, and global community-building. Its work is focused on improving the lives of the estimated...
In an effort to move forward into a more equitable community, where all families with PWS are effectively represented and have access to the necessary resources for this PWS journey, regardless of race, ethnicity, geography, gender identity, sexual preferences, language, disability, or socioeconomic status, PWSA | USA is honored to introduce our Equity Committee. As...
PWSA | USA and The Foundation for Prader-Willi Research hosted a virtual PWS community conversation on September 15 with representatives from Acadia Pharmaceuticals. This webinar provided an opportunity for Acadia to share and review the COMPASS PWS trial data directly with the PWS community, provide additional context around the results, and address questions from families....
Question: Female, 58 years old, UPD subtype This woman is experiencing some behavior issues recently, arguing, aggressiveness, excessive skin picking, and hallucinations. A doctor at University of Louisville Hospital, where she was seen yesterday, has suggested some possible meds for her psyche doctor to consider. The meds are loxapine, clozapine, and depskote. She has a...
contributed by Trevor Dykes, Dad to Emerson and Ellis (4 & 1, living with PWS) My husband, Jamie, and I had always planned to build our family through adoption. We kicked off the process in early 2022. After receiving our home study approval in June 2022, we settled in for what we expected to be...
The PWS United podcast exists for one reason — you! Whether you’re a parent, a sibling, a self-advocate, a caregiver, a medical professional, or a friend touched by Prader-Willi syndrome, this podcast is here to inform, support, and bring hope to our community. Now we need your help to make it even better. We’ve put...
contributed by Jodi Joskowitz, “Mimmy” to Bennett (2, living with PWS) For many years, I answered to a specific name and lived a specific life. I worked as a saleswoman on Wall Street, where I was known simply as “JJ.” But in September of 2023, I was branded with a new name. I became Mimmy....
Question: Male, 1 year old, unknown subtype My son was recently admitted to the emergency room by ambulance due to a seizure. Now he has never had a seizure before. While we were in the hospital, he had a second seizure. So, two seizures within four hours. After testing, they confirmed he had the flu...
contributed by PWSA | USE CEO Stacy Ward One of the things I love most about PWSA | USA is that we never lose sight of who we’re here to serve. That was on full display recently when members of our Adults with PWS Advisory Board gathered in Savannah for an in-person meeting focused on...
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...
Each year, World Sexual Health Day reminds us that sexual health is about much more than sex. It is about dignity, relationships, belonging, safety, identity, autonomy, and the ability to live a full and meaningful life. The World Association for Sexual Health describes sexual health as a state of physical, emotional, mental, and social well-being...
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.
