Here’s Your Next Opportunity to Gather Together In-Person with the PWS Community! Celebrate PWSA | USA’s 50th Anniversary in St. Louis, MO Learn More and Purchase Gala Tickets After experiencing an amazing time together in Phoenix at the United in Hope International PWS Conference, we’re reminded how meaningful it is to gather in person –...
submitted by Stacy Ward Sybil Cohen has been a dedicated volunteer for PWSA | USA for many years, serving in numerous vital roles including chapter leader, board member, and parent mentor. Her unwavering commitment was especially evident at the recent United in Hope Conference, where she volunteered at the registration and check-in desk for the...
PWSA | USA is excited to announce the return of the Building Our Social Skills (BOSS) program this fall. We know how important social development is for individuals with Prader-Willi syndrome, and how challenging it can be. BOSS, funded by FPWR was created to provide a supportive, structured space for participants to build communication skills, boost confidence,...
Question: Male, 15 months old, UPD subtype My son has esotropia and amblyopia primarily affecting his right eye but intermittently seen in his left eye as well. Surgical correction has been discussed and currently we have been instructed to patch his dominant eye (left) for two hours daily. We would like to pursue the interventions...
Florida has officially launched the Sunshine Genetics Act, a first-of-its-kind initiative offering free, voluntary whole genome sequencing (WGS) for all newborns—and PWSA | USA was honored to stand at the forefront of this historic moment for rare disease families. On July 9, 2025, leaders in science, medicine, and policy gathered at Florida State University’s Interdisciplinary...
submitted by Stacy Ward This spotlight is in recognition of Diane Larsen, mom to Carrie Ilijevich (Director of Marketing/Communications at PWSA | USA.) Diane has volunteered countless hours for PWSA | USA’s convention in 2023 and the most recent United In Hope International PWS Conference. Although Diane has no personal connection to the Prader-Willi syndrome...
We can’t overstate this enough – thank you. We are grateful to every family, individual, caregiver, professional, researcher, and supporter who took time out of your busy lives, traveled from near and far, and made the United in Hope International PWS Conference in Phoenix the most unforgettable gathering we’ve ever experienced. This was a historic...
Question: Female, 60 years old, Unknown Subtype My sister is on hospice with cardiomyopathy. She has been prescribed morphine for pain, but it seems to be making it worse. She appears to be having symptoms of toxicity at a very low dose. She often reacts differently to medications and I’m wondering what we can give...
submitted by Anne Fricke and her daughter, Freya (13, living with PWS) Before the conference last week, my daughter Freya had only met two other people with PWS in her life. One was when she was too little to remember. The other is a friend who lives 5 hours away and we see once or...
Question: Female, 31 years old, UPD subtype Do people with PWS age at an accelerated rate compared to those who do not have this syndrome? My 31 year old daughter was just diagnosed with arthritis in her knee. As I look back on her health history, I can see how many of her conditions are...
Summer is here! This means different things to different families, often depending on the age of your loved one with PWS. This time may bring a mix of relief and worry, a freeing of the schedule and a burdening of supervision needs. While every family is different with their own unique needs during this time...
Question: Female, 61 years old, Deletion subtype Are there any proven drugs to help with skin picking? My daughter stopped skin picking when she was about 12 and in the past year, she has started again. She cannot seem to stop. I have talked to all of her doctors about it and no one seems...
Contributed by Melanie Zalman When my daughter was just a bit older than 2, someone on the Birth-Three Facebook group shared phenomenal photos of a visit they made to a horse barn with their family. Cut to a super sweet snapshot of their little hypotonic kiddo on a HUGE, majestic horse caught my attention. I...
Six of our dedicated PWSA | USA Advocacy Ambassadors (Dorothea Lantz, Elaine Towle, Jessica Kempa, Sheri Mills, Michelle Torbert and Jennifer Garzia—also joined by her family, including her son Rocco who is 20 years old living with PWS) traveled to Washington, D.C. last week to take part in Patients Rising’s 4th annual “We the Patients”...
Question: Male, 27 years old, Deletion subtype What would a critically hazardous weight be for someone with PWS that’s height is 4’11”? Also, what is considered a good range for their blood sugar levels in PWS with diabetes? Nurse Lynn’s Response: When caring for someone with PWS, it’s important to remember that body weight alone...
Brooke Fuller is 51 years old and lives with Prader-Willi syndrome. She lives in Michigan and has been a board member for PWSA | USA since the beginning. In an effort to learn more about our adults with PWS, and to shine a light on their lives and experiences, we asked our Advisory Board members...
Question: Female, 6 years old, UPD subtype We have seen a lot of information about PWS patients with UPD having a higher risk of developing psychosis typically by age 20. We have recently put our daughter into a mental health/behavioral therapy program where she will meet with a therapist once a month. This way as...
Abbott Philson is 41 years old and lives with Prader-Willi syndrome. He lives in Maine and has been a board member for PWSA | USA for 25 years. In an effort to learn more about our adults with PWS, and to shine a light on their lives and experiences, we asked our Advisory Board members...
Aardvark Therapeutics recently 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). This randomized, double-blind, placebo-controlled trial is an important step toward identifying a potential new treatment option for the PWS community, and...
submitted by Sarah Kasaby, mom to Khaled (living with PWS)
submitted by Caitlin Heckman, mom to Ada (1, living with PWS) We received Ada’s PWS diagnosis when she was one month old, and, like everyone in this community, our world was turned upside down. This condition we previously had no idea existed became the center of our attention. The NICU doctor who gave us her...
Question: Female, 42 years old, UPD subtype My question is about treatment for osteoporosis. My sister, to my knowledge, has never had any hormone replacement. She is obese, BMI 38, and the only abnormal lab done by her gynecologist was testosterone, which was “below the technical range of the assay.” Her vitamin D levels are...
We have an exciting opportunity to livestream a session at our 2025 International PWS United in Hope Conference! If you haven’t listened to PWS United yet, we have quite a collection of PWS-related episodes, from research to advocacy, family support, and more. We will be recording some of the upcoming conference sessions to share with...
Kate Kane is 43 years old and lives with Prader-Willi syndrome. She is legally a resident in the state of Maryland but resides in a home in Wisconsin for people with PWS. Kate has been a board member for PWSA | USA for over 15 years. In an effort to learn more about our adults...
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.
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
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.
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.
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.
