Since 2022, PWSA | USA has brought the Prader-Willi syndrome community to Washington, D.C. for our biennial D.C. Fly-In, and this year is our biggest yet. Nearly 200 parents, caregivers, individuals with PWS, family members, and industry partners will gather May 4-6 at the Yours Truly DC Hotel to advocate for meaningful change on Capitol...
We’re excited to share a new family-friendly guide: “Respiratory (Breathing) Concerns in Prader-Willi Syndrome.” Did you know breathing concerns are among the most important health issues to monitor in PWS? From differences in how the brain regulates breathing to lower muscle tone, people with PWS can be more vulnerable to breathing challenges during sleep, sickness, and...
Some of our volunteers are front and center at events and fundraisers, speaking from podiums, in legislative offices, and with local news station. Other volunteers are there for the quieter moments, pouring the proverbial cup of tea for new families or showing up to work group meetings to help clarify the path of this organization. ...
submitted by Winnie White, mom to Sandy Kay (11, living with PWS and Autism) Autism is not new to our family. My son, now 21, was diagnosed with autism at the age of three. We navigated early intervention services, and by age five he was successfully mainstreamed into kindergarten. While he continues to experience challenges...
Question: Male, 29 years old, unknown subtype Is it normal for people with this eat then vomit violently? We don’t know much about this, just that he has it! Nurse Lynn’s Response: Violent vomiting is not normal for someone with PWS, and it should always be taken seriously. In fact, people with PWS usually do...
Board of Directors Member: Marguerite Rupnow, MBA Board Role: Chair Years on the Board: 11 What first connected you to the Prader-Willi syndrome community, and what inspired you to join the PWSA | USA Board of Directors? I have worked with individuals with Prader-Willi syndrome (PWS) for 38 years, dedicating the past 24 years exclusively...
contributed by Dorothea Lantz, mom to Hunter (living with PWS) When Hunter was diagnosed with Prader-Willi syndrome as a baby, my world shifted overnight. Like so many parents in this community, I suddenly found myself learning a whole new language—growth hormone, hypotonia, food security, behavioral supports, specialists, therapies. I was trying to understand what life...
Question: Female, 19 years old, unknown subtype I have PWS and I’m wondering if I can have kids of my own. Nurse Lynn’s Response: Yes, it is possible, but it is rare. Most girls and women with PWS have a condition called hypogonadism. This means your body may not make the hormones needed for normal...
April 10th is National Sibling Day, and we’re honoring it by sharing stories from a few incredible sibling advocates in the PWS community. From taking their voices to Capitol Hill to organizing coffee shop and marathon fundraisers, these advocates open up about what sibling advocacy looks like in their lives and the advice they have...
We at PWSA | USA are incredibly grateful to our volunteers. These wonderful volunteers show up in a variety of capacities to help us carry out our mission to “enhance the quality of life of and empower those affected by Prader-Willi syndrome.” Some are older parents well-versed in the intricacies of the PWS community. Some...
Question: Male, 1 year old, imprinting subtype 1 year old, non-deletion imprinting center defect- he has been having “episodes”. He will be playing and then lose all muscle control. Head bobbing, falls over, almost like a little drunk person. Which is not normal, he has extremely good muscle control, always on the move and in...
On Monday, April 6, 2026, PWSA | USA received a letter from our partners at Soleno Therapeutics sharing significant news: Soleno has agreed to be acquired by Neurocrine Biosciences. Soleno describes this as an exciting development, noting that the transaction “marks an exciting milestone for our company and represents the next step in our efforts...
Contributed by Hannah Kellerman, sibling to Audrey who passed away from complications of PWS in 2024. I first heard the words Prader-Willi Syndrome when I was three years old. I didn’t understand what those words had meant at the time; I was just so excited to have a new baby sister. Now, eighteen years later,...
Question: Male, 26 years old, deletion subtype My son has struggled with severe behavioral outbursts now at a rate of about 3-4 times a year, where bystanders will call police and he will either be arrested or brought to psych eval. Always calms down, is sent home. Had been on risperidone at increasing amounts as...
One year ago, on March 26, 2025, the Prader-Willi syndrome community reached a historic milestone. For the first time, a treatment, VYKAT™ XR (diazoxide choline), was approved by the FDA specifically for hyperphagia in individuals ages 4 and older living with PWS. For a community that has long understood hyperphagia as the most urgent and...
Egyptian Lentil Soup (Shorbet ‘Ads) *submitted by Sarah Kasaby, mom to Khaled, living with PWS Ok so this is my beloved Egyptian Lentil Soup (Shorbet ‘Ads). It is very famous in winter, especially when you want something quick, nutritious, and keeps your body (and belly) warm. It’s perfect for our PWS diet because you literally...
*submitted by Lisa Graziano As shared by the CA State Council on Developmental Disabilities in March, 2026 the U.S. Department of Housing and Urban Development (HUD) issued a rule that changes how much notice tenants receive before eviction for unpaid rent in HUD-assisted housing. What You Need to Know In 2024, HUD created a rule...
Question: Female, 5 months old, UPD subtype We are looking for guidance on supplements for infants with Prader-Willi syndrome, particularly for brain development. Our daughter is 5 months, and we are beginning conversations about whether supplements may be appropriate for her at this stage. We understand that Dr. Miller has published general supplement recommendations for...
Last month, we shared that Aardvark Therapeutics announced a voluntary pause in enrollment and dosing for the Phase 3 HERO clinical trial evaluating ARD-101 for hyperphagia in individuals with Prader-Willi syndrome (PWS). In a new update, Aardvark has provided additional details to help explain this decision and outline next steps. According to the announcement shared...
Question: Male, 20 years old, deletion subtype My son had a seizure last Saturday where he lost consciousness and was stiff in his body, he then jolted awake and went on to have full body jerking for 7-8 seconds. The whole seizure lasted under 2 minutes, but he took around an hour to be fully...
Board of Directors Member: Tina Ihlenfeld, MBA Board Role: Treasurer Years on the Board: 2 What first connected you to the Prader-Willi syndrome community, and what inspired you to join the PWSA | USA Board of Directors? I first became connected to the Prader-Willi syndrome community through my work at Prader-Willi Homes in Wisconsin. In...
We are recognizing Sleep Awareness Week (March 9-14) and World Sleep Day (March 14) because disordered sleep is a common issue in individuals with Prader-Willi syndrome. Many of our loved ones are diagnosed with obstructive sleep apnea, central sleep apnea, cataplexy, narcolepsy, and/or excessive daytime sleepiness. These symptoms can greatly impact mental cognition, physical stamina,...
Question: Female, 23 years old, deletion subtype Are there any disassociation or dissociative disorders in Prader- Willi? Is disassociation part of PWS? Nurse Lynn’s Response: Dissociation or a dissociative disorder is not considered a core or defining part of PWS. Experts who study PWS, including those summarized in the IPWSO Mental Health Network Report (June...
March is Developmental Disabilities Awareness Month! Developmental disabilities are conditions that begin at birth or in childhood and may affect physical development, learning, language, or behavior. While these conditions can present challenges, they are only one part of a person’s story. Individuals with PWS are first and foremost people, with personalities, talents, preferences, humor, determination,...
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.
