PWS advocates returned from EveryLife Foundation for Rare Diseases’s Rare Disease Week on Capitol Hill energized and inspired for the work ahead, especially as we look toward PWSA | USA’s D.C. Fly-In this May. Twenty-two PWS advocates, including four individuals living with Prader-Willi syndrome, gathered on Capitol Hill alongside 800+ other rare disease champions from...
Rare Disease Advocacy in Orlando “On Rare Disease Day, I had the privilege of attending ‘Turning the Page on Prader‑Willi Syndrome’ in Winter Park, FL, to celebrate Dr. Destiny Pacha, an author, PWS education specialist, a friend and a true life‑changer for so many families in the PWS community. Hearing the story that began with...
We’re excited to share a new family-friendly guide: “Swallowing in Prader-Willi Syndrome.” This easy-to-understand resource helps parents and caregivers recognize signs of swallowing difficulties, understand silent aspiration, and learn practical mealtime and pill-swallowing tips to help keep children safe and healthy. From knowing when to ask for a swallow study to simple habits that can make...
Question: Male, 2.5 years old, deletion subtype What are the implications for low cortisol levels in toddler boys with deletion subtype (type 2)? We’ve noticed some more fatigue and he sleeps longer during the night. What can and should be done about it? Our pediatrician ran a blood panel and cortisol came back at 3.7...
Contributed by Anne Fricke, mom to Freya (14, living with PWS) I remember when I really began to grasp the concept of intersectionality, though I didn’t have a word for it then. It was years ago in an interview with a special education teacher talking about the school to prison pipeline that affects disabled students...
Contributed by Patrice Carroll, LICSW, Director of PWS Services at Latham Centers When people hear the word caregiver, they often picture someone gently holding a hand, offering a kind smile, maybe helping with medication or a wheelchair. That is part of the job. It is also the smallest part. Being a staff caregiver for people...
Question: Female, 25 years old, deletion subtype My daughter is 234.8 pounds but prior to the year before she was 185 pounds. I didn’t change her diet, but when she fractured her ankle, it took a year for her to heal but it is still tender to walk on it. In that time, she still...
Board of Directors Member: Dini Rao Board Role: Chair of the Equity Committee Years on the Board: Zero – I just joined! Q: What first connected you to the Prader-Willi syndrome community, and what inspired you to join the PWSA | USA Board of Directors? A: My daughter Ayoni was diagnosed with PWS during the...
Submitted by Melanie Zalman, PWSA | USA’s Director of Development and mom to Josephine (living with PWS) Dan reached out at the time his nephew “Maverick” was born with PWS. Dan’s brother and sister-in-law live with Maverick in Arizona. Dan basically said, I’m eager to help the community in any way I can. I have...
Contributed by Emily Felt, mom to Olivia (14, living with PWS) In the spirit of Children’s Mental Health Week, I’m happy to share an anecdote from my life as a PWS-mom. My daughter Ollie just turned 14 last week, and the big day came with a special celebration with friends and family. In some ways, it...
PWSA | USA is built on the dedication of families, caregivers, and supporters who believe in advancing care, advocacy, and resources for individuals with Prader-Willi syndrome. In addition to lived experience, the organization relies on professional expertise to remain strong, sustainable, and forward-thinking. This is an opportunity not only for parents and caregivers, but also...
Question: Male, 6 years old, deletion subtype My son is 6 and has PWS and autism. He has struggled with staying sleep for quite some time now. No problem falling asleep, but he consistently wakes up between 12:30-1:30am every night and will sometimes stay awake for 1-2 hours before trying to go back to sleep,...
As we prepare for the 12th Annual Hot Stove Dinner, happening Saturday, March 21, 2026, at the Bradenton Country Club in Bradenton, FL, and online for virtual guests, event host Clint Hurdle takes us on a journey through the event’s history. Originally shared with PWSA | USA in 2022, Clint’s heartfelt reflection, A Legacy of...
Contributed by Kelly Guillou On February 3, 2026, the Georgia Association for Prader-Willi Syndrome held an advocacy day at the Georgia State Capitol. The event began with a luncheon in the Capitol building, generously sponsored by Soleno Therapeutics. The luncheon was open to members of the PWS community, state legislators, and their staff. The turnout...
As PWS parents and caregivers know, food and diet are a lifelong struggle with individuals with PWS. It begins with hypotonia and failure to thrive in newborns and infants, progressing through the various stages of hyperphagia throughout childhood and adulthood. Some caregivers would say that the challenges become more manageable as our loved ones age,...
Question: Female, 50 years old, Deletion subtype Hi there. My sister is 50 and lives in a group home. In the last year, she has started to have extreme behavior that she hasn’t had before. She runs away from her home, screams aggressively, tears up her belongings, etc. I’m very concerned because I’m afraid the...
February 3, 2026 Today, the rare disease community has meaningful news to celebrate. Congress has passed legislation that includes a five-year reauthorization of the Rare Pediatric Disease Priority Review Voucher (PRV) Program, increased federal investment in rare disease research, and several additional healthcare provisions that directly impact patients and families living with rare conditions. For...
Board of Directors Member: Jeffrey Covington Years on the Board: Four Q: What do you find most meaningful about serving on the Board, and what excites you most about the work ahead? A: I find it meaningful to still have a connection with the PWS community. I spent a great deal of my professional career...
When Winter Storm Fern stranded the PWSA | USA team in Dallas, Texas, at the conclusion of our staff retreat, flights were grounded and travel home became impossible. But instead of letting unexpected circumstances slow us down, that moment sparked an idea – one rooted in the reality our community lives every day. Families and...
Question: Female, 2 years old, Deletion subtype Our 2-year-old daughter is having her tonsils and adenoids removed. This will be her 5th surgery. What are some things we need to mention to our medical team to help make sure her care is up to par with our PWS concerns? Nurse Lynn’s Response: Because your daughter...
Submitted by Conor Heybach, adult living with PWS Hello, this is Conor Heybach from the Adults with PWS Advisory Board. I want to talk about a dilemma that has become a major pandemic in our lives. I will explain the dangers of pornography and social media in teens and adults with PWS. Excessive use of online social platforms...
Question: Female, 12 years old, unknown deletion My daughter has been getting a temperature on and off during the day and night, but otherwise she seems fine. Could this be an issue with regulating her body temperature? If so, how is something like this treated, and what type of doctor should we see? Nurse Lynn’s...
We are thrilled to share that PWSA | USA has partnered with Soleno Therapeutics on an exciting new awareness initiative that will be featured during this year’s Super Bowl – an ad in the Super Bowl printed program! The powerful message — “No end zone. No final whistle. Just goal posts that keep moving.” — brings...
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.
