The Prader-Willi Syndrome Association (PWSA) of Oregon and Washington is bringing its highly successful regional PWS Roadshow to Spokane on Saturday, July 11, 2026. This foundational gathering serves as a vital resource hub and community-building event for Northwest families navigating Prader-Willi Syndrome (PWS), a rare genetic disorder. Because PWS is rare, families frequently face isolation,...
contributed by Jon Krasnoff, dad to Thomas (8, living with PWS) I don’t have any photos from my first Father’s Day. My wife, Lisa, doesn’t either. I’m not sure why. Maybe we forgot. Maybe we were too tired. Maybe taking a photo would have required us to stop and acknowledge that we were home —...
Question: Female, 5 years old, deletion subtype My daughter doesn’t want to drink water. I do not want to add any extra sugar. How can I help her drink more water. Also, what type of water bottles would she drink water by herself ? I have tried all sorts of water bottles – stainless steel...
contributed by Anne Fricke (mom to Freya, 14, living with PWS) When I received Freya’s diagnosis of Prader-Willi syndrome via a phone call from her pediatrician on a Friday night, my husband was not home. I wouldn’t be seeing him until the next morning. After the instant flood of tears passed, I debated calling him....
Question: Female, 8 years old, deletion subtype I thought during one of the seminars during the 2025 pws conference, that it was said that anytime someone with PWS gets put under with anesthesia that steroids should be automatically given. If this is true, I was wondering why, If there is a steroid that is preferred...
Board of Directors Member: John LensYears on the Board: 4+ What first connected you to the Prader-Willi syndrome community, and what inspired you to join the PWSA | USA Board of Directors? My son Hunter, who is now 27 years old, was born with Prader-Willi. I am fortunate in life to understand the importance of...
As the mother of a child with PWS who is now heading into her teen years, I know well the struggles of our loved ones in developing appropriate and effective social skills. Where my other daughters develop and navigate their social relationships with relative ease (are any relationships in young adulthood without the growing pains...
Question: Male, 3 months old, unknown subtype Read something about oxytocin helping with sucking/swallowing as my child suffers from dysphasia and silent aspiration. I reached out to our endo & asked if it was available. She basically told us that it showed promising signs, but that there isn’t enough data so it wasn’t something they...
Question: Male, 2 weeks old, unknown deletion My newborn was just diagnosed with PWS and is in the NICU for feeding alone. They would like to place a G (gastric) tube and then he can go home. He does breastfeed and bottle feed, but not consistently, and not the full amount that he needs ever....
Question: Male, 21 years old, unknown subtype We are in Canada and our grandson has been recommended to go on testosterone by the doctor who looks after his growth hormone treatment. As the syndrome is quite rare here we are not sure all the doctors have the same experience with the syndrome, even the growth...
As PWS Awareness Month comes to a close, we want to send you (or rather, shout it from the rooftops) a special THANK YOU for all of your incredible awareness efforts! We are spreading awareness of PWS into our schools, our communities, workplaces, medical facilities, libraries, government offices, and on media platforms all over the...
Every two years, individuals living with Prader-Willi syndrome (PWS), their family members, and supporters do something remarkable. They pack their bags, book their flights, and travel to Washington, D.C. to make sure the voices of our rare community are heard where it matters most. This May, that tradition reached new heights. PWSA | USA’s 3rd...
Question: Female, 20 years old, deletion subtype Is Doxepin (low dose, 10 mg) used as a sleeping aid safe for my daughter?She was ok the first day, but very sleepy on the second day (and we stopped). I’m wondering whether her body will adjust to it or if it will worsen. Nurse Lynn’s Response: Doxepin...
On April 6, 2026, PWSA | USA received news that Soleno Therapeutics had agreed to be acquired by Neurocrine Biosciences. Today, May 18, 2026, we are following up with an important update: That acquisition is now complete. A Quick Recap When the acquisition was first announced, Soleno described it as an exciting development representing the...
Why is it important to have an awareness day? The Merriam-Webster dictionary defines awareness as the quality or state of being aware: knowledge and understanding that something is happening or exists. So, quite simply, the reason we celebrate PWS Awareness Month and PWS Awareness Day, is because we need people to know that Prader-Willi syndrome exists....
PWSA USA’s Own Melanie Zalman Appointed by Governor to New Hampshire State Rare Disease Advisory Council PWSA | USA is excited to announce that Melanie Zalman, the organization’s Director of Development and mom to Josephine (7) living with PWS, has been officially appointed by Governor Kelly Ayotte to serve on the New Hampshire Rare Disease...
BELLINGHAM, WA — On May 3, 2026, the PWS Roadshow arrived in Bellingham, hosting a landmark gathering for families impacted by Prader-Willi Syndrome (PWS). The event served as both a resource hub and a foundational community event, bringing together eight families to share experiences and access specialized support for this rare genetic disorder. For many...
Question: Male, 14 years old, UPD subtype We’re looking for resources/guidance on supporting our son as we also move toward separation/divorce and separate households. Thank you! Nurse Lynn’s Response: Separation or divorce is hard for any family, but when you’re parenting a child with special needs, it adds layers of emotional, logistical, and medical complexity...
The Kansas Drug Utilization Review Board will be meeting virtually on Wednesday, May 20, 2026, from 10am-2pm CT. Here’s how you can help: The Kansas DUR Board needs to hear directly from you – the parents, caregivers, and family members who understand the real-life impact of hyperphagia (excessive hunger) in PWS. One of the medications...
Question: Female, 2.5 years old, unknown subtype Hello my daughter keeps having recurrent UTIs. She is scheduled for a test in February which involves pushing iodine through a catheter and watching on an ultrasound to see how everything is functioning. Is there anything else I should let the urologist know pertaining to pws? Thank you!...
contributed by Sheri Mills, mom to Lyra (7, living with PWS) During that first year after Lyra’s diagnosis, the idea of community felt impossible. I had one connection—a mentor mom PWSA paired me with—one steady, compassionate voice on the other end of the phone. I loved her then and I love her now, but at...
Question: Female, 29 years old, deletion subtype Is there a connection and established pattern of he (hepatitis encephalitis) as a result of extreme eating and foraging that creates the production of ammonia to the brain for PWS folk that along with extreme anxiety and leads to episodes of schizoaffective disorder? Our daughter seems to have...
The month of May is an important time for our rare disease community because it’s recognized as Prader-Willi Syndrome Awareness Month. While advocacy efforts, the fight for research advancements, and celebration of our loved ones is important 365 days a year, the 31 days in May offer an opportunity to really show off our PWS...
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...
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.
