by Lisa Graziano, M.A., LMFT Most children and adults with PWS are highly motivated to have friends, but for most, friendships don’t come easily, if at all. More often than not, our loved ones don’t quite fit squarely into the Special Needs World, nor do they fit entirely in the Typical World. Our loved ones...
Question: Male, 34 years old, UPD subtype Our son has never taken GH. One day, his endocrinologist noticed he had high hemoglobin levels, the highest being 18. Because of this, doctor referred him to a hematology specialist. Doctors checked his lungs, kidneys, and liver, and everything was fine. Seeing that everything was okay, they are...
We’re thrilled to announce the resurgence of our Rare Aware Art Share campaign in 2026! The Rare Aware Art Share will now be an annual project for PWSA | USA. We will be seeking submissions on specific themes in the beginning months of the new year. This year’s theme is in honor of our upcoming...
Question: Male, 22 years old, unknown subtype I am again trying to get my son on an adult maintenance dose of growth hormone. He now has only Medicaid insurance. What testing should I expect them to require for prior authorization? Will this testing be appropriate for assessing PWS need for growth hormone administration? Does the...
Soar to new advocacy heights in Washington, D.C.! We are excited to announce the application to attend PWSA | USA’s 3rd D.C. Fly-In, which will take place May 4 – 6, 2026, is now available. This year’s event hotel will be the Yours Truly DC Hotel. During the Fly-In, we will learn about Policy affecting the PWS...
Question: Female, 15 years old, Deletion subtype Vivimos en Riohacha, La Guajira Colombia. Mi hija tiene escoliosis por lo que se indica hacerle cirugía quiero saber los riesgos que está cirugía puede ocasionar. Gracias por la atención y apoyo. I live in Riohacha, La Guajira, Colombia. My daughter has scoliosis, and surgery has been recommended...
The year 2025 marked an extraordinary period of progress, collaboration, and momentum for PWSA | USA’s Medical and Research pillar. One of the most historic milestones for the PWS community occurred in March 2025 with the FDA approval of the first medication specifically indicated for the treatment of hyperphagia in individuals with PWS. This landmark...
Question: Female, 30 years old, UPD subtype Should a person with PWS use the same BMI ranges as someone without PWS? We are trying to figure out a good goal weight range for my loved one. Currently, her BMI is around 20 – which her PCP says is normal. Is this a good measurement to...
Washington, DC | December 10–11, 2025 PWSA | USA recently participated in the EveryLife Foundation for Rare Diseases’ Community Congress end-of-year convening in Washington, DC. This two-day gathering brought together rare disease advocates, policy experts, and community leaders to reflect on state-level legislative progress in 2025, assess emerging challenges, and begin shaping a coordinated strategy...
Shared on behalf of Harmony Biosciences: As we move into the holiday season, we all look forward to the meaningful moments that make this time of year special: time spent together, family traditions, and a chance to settle into a quieter winter rhythm. For those supporting someone with PWS, the day-to-day challenges of excessive daytime...
submitted by Melanie Zalman, PWSA | USA’s Director of Development and mom to Josephine (living with PWS) When Josephine was born I worried a lot about what our Jewish holiday traditions would look like and how (more like IF) I would be able to make them PWS friendly. When she began to eat solid food,...
Many main-stream winter holiday traditions fall short of being “PWS-friendly.” From leaving cookies for Santa and hot cocoa after ice skating to gingerbread houses and deep-fried latkes, it can be challenging for some families to adapt these traditions to fit the needs of Prader-Willi syndrome. Sometimes traditions simply need some small changes, and others may...
submitted by Katie Martinez, PWSA | USA’s Fundraising Coach and mom to Samuel (living with PWS) On November 21, 2025, friends, family, and supporters gathered at the Main Line Unitarian Church in Devon, Pennsylvania for an unforgettable evening: A Bow for Áine Mirella – Performance for PWS. The concert was a beautiful celebration of music, community, and...
Contributed by PWSA | USA’s CEO Stacy Ward, MS, BCBA Dear PWS Community, As we close out another meaningful year – a milestone year – I want to speak directly to you: our families, donors, partners, and advocates. Thank you. Your generosity, belief in our mission, and dedication to the Prader-Willi syndrome (PWS) community are...
If you’ve ever received a New Diagnosis Care Package from PWSA | USA, there’s a good chance it was carefully prepared by Ella Frazier. Ella is the sister of Joseph (JoJo), who lives with Prader-Willi syndrome, and from the very beginning, she has played an important role in his journey. Her care and compassion shine...
Question: Male, 22 years old, Deletion subtype My son was diagnosed with Prader Willi when he was born. I’m in a position whether I should place him in a group home where he can get help. He’s currently living at home & it’ s getting out of control with his weight gain & diabetes. Please...
Submitted by Anne Fricke, mom to Freya (14, living with PWS) Over a year ago, I signed Freya up for Harmony Biosciences’ TEMPO clinical trial of pitolisant, a medication to treat excessive daytime sleepiness. I had some reservations at first, mostly centered around making the mental shift of having a vibrant mistrust of pharmaceutical companies...
Question: Female, 11 years old, UPD subtype My daughter deals with some measure of skin picking, but it has improved over time and it’s the least of our battles to fight or worry about at this moment. I need help knowing how to talk about this behavior with the other adults in her life, as...
We are deeply saddened to share the passing of Fausta Margaret Deterling, co-founder of the Prader-Willi Syndrome Association, who passed away peacefully on November 23, 2025, at the age of 94. Fifty years ago, alongside her husband, Gene, Fausta helped create and build PWSA | USA (then known as Prader-Willi Syndrome Parents and Friends). At...
Question: Male, 32 years old, Deletion subtype My son has been taking testosterone for 18 years, but his LH blood test is 1.1 low. Is it normal for him? Nurse Lynn’s Response: People with PWS often have something called hypogonadism. That means the part of the brain (hypothalamus) and the glands that control hormones (pituitary...
Contributed by Dorothea Lantz, PWSA | USA Director of Community Engagement We’re celebrating a monumental victory for the rare disease community! On December 1, 2025, the U.S. House of Representatives passed the Give Kids a Chance Act — a landmark step toward restoring critical pathways for treatments that children with rare diseases and pediatric cancers...
Question: Female, 22 years old, Deletion subtype My daughter weighs 90kg and is physically active. What’s the average life expectancy? She doesn’t have high blood pressure yet but when would I know if she is going to get high blood pressure? Nurse Lynn’s Response: High blood pressure can result from several factors, including genetics, obesity,...
Mark your calendars – the 2026 PWSA | USA D.C. Fly-In will take place May 4-6, 2026, in Washington, D.C., at the Yours Truly DC Hotel! We’re excited to once again bring 150 members of the PWS community, parents, siblings, extended family members, supporters, and most importantly, individuals living with PWS, to Capitol Hill to share...
Earlier this month, five members of the PWSA | USA team (and Josie – Melanie Zalman’s 7-year-old daughter who is living with PWS) traveled to Pittsburgh, PA, for a special visit to PANTHERx Rare Pharmacy’s headquarters. PANTHERx is the dispensing pharmacy for the FDA-approved treatment of hyperphagia in PWS. The visit offered PANTHERx staff 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.
