March is Women’s History Month and the 2025 theme is “Moving Forward Together: Women Educating and Inspiring Generations.” There are many incredible women in the PWS community who have educated families, schools and residential facilities, and professionals, inspired generations, and ultimately have improved the quality of life for our loved ones living with PWS. We...
Beat the Heat in Arizona! As we count down the days to the United in Hope: International PWS Conference in Phoenix, AZ, our excitement at gathering with so many families from the PWS community grows! We’ll be spending time with old friends, making new ones, and collectively sharing information, guidance, support, great conversations, maybe some...
Question: Male, 7 months old, unknown subtype He has a cough, congestion, and I have the humidifier with Vicks vaporizer going and been using the nose sucker by Frida to help clear his airway. But I’m so worried at night especially knowing now he has sleep apnea. He’s having a hard time breathing. I really...
Your voice matters! Florida has the opportunity to lead the way in early genetic screening for rare diseases like Prader-Willi syndrome (PWS). By supporting the Sunshine Genetics Act (HB 907 / SB 1356), we can help ensure that newborns receive critical genetic testing, leading to earlier diagnoses and improved care for individuals affected by rare...
submitted by Ashley Hendrickson, mom to Micah (living with PWS) By the grace of God, Micah has been doing very well, and we wanted to share our story with hope in encouraging others: Like so many others, our story begins at birth. He had all the tell-tale signs from low muscle tone, poor feeding, and...
May is Prader-Willi Syndrome (PWS) Awareness Month—a time to amplify voices, celebrate resilience, and rally support for those affected by PWS. This year, we’re launching United We Brunch, a nationwide movement bringing people together to raise awareness and strengthen our community. Whether it’s a small gathering or a large event, every brunch hosted across the...
Question: Female, 37 years old, Deletion subtype I have Prader-Willi syndrome and wanted to know what is the correct machine use for obstructive sleep apnea in people like me. I currently have a CPAP machine and just recently had a sleep study done. The doctor said I have the wrong machine and need a BiPAP...
TREND Community released its latest report on Gastrointestinal Issue in the PWS Community. This report expresses some of the most common topics involving GI issues, including constipation and bowel movements, vomiting/spitting up/gagging, prune juice and other foods, reflux, and community support. This report looked at the conversations to determine different emotions in relation to GI...
submitted by Lisa, Julia’s twin sister Julia is a 55-year-old woman living with Prader-Willi syndrome in Queensland, Australia. What steps did you take to prepare for her life as an adult? Julia secured funding through the Australian NDIS system to live Independently. We then looked for a placement that was close to family and support...
Rare Disease Week on Capitol Hill 2025 was a transformative experience for the Prader-Willi syndrome (PWS) community and the broader rare disease advocacy movement. From February 24–26th, 36 advocates from PWSA | USA, including 10 individuals living with PWS and members of the Advocacy Ambassador program, traveled to Washington, D.C., to share their stories, educate...
Question: Male, 20 years old, UPD Our son, 20 years old, UPD, since his childhood presented one of the characteristics of the Syndrome: SKIN PICK. We have treated him with multiple creams and therapeutic aids. But now, he started with the ANAL skin pick, and it is being very difficult for us to handle these...
Part of our PWSA | USA team, along with fellow PWS advocates, attended Rare Disease Week in Washington, DC, February 24-26. Our advocates attended group lectures and sessions alongside other rare disease advocates the first part of the week, then met with their elected officials on Wednesday. Our advocates say they had a successful experience...
Our advocates are in Washington, D.C. this week for Rare Disease Week (February 28 is Rare Disease Day!). On Wednesday they will be meeting with their representatives to advocate for PWS and the rare disease community. While not everyone can travel to D.C. themselves, you can get in touch with your representative via phone or...
Question: Female, 1 month old, unknown subtype My baby is 1 month old, and the diagnosis showed Prader-Willi. I want to ask if there are people with mild symptoms and also if there are people who are independent. Can a person be diagnosed with Prader Willi but live a normal life? Nurse Lynn Response: Thank...
Individuals with PWS often exhibit rigidity, obsessive-compulsive tendencies, emotional outbursts, as well as unusual thoughts and behaviors. However, the onset and severity of these behaviors vary among individuals with PWS depending on age, genetic subtype, and other factors. A new study by Dr. David Evans at Bucknell University aims to identify early risk factors for...
We’ve made it easy to contact your representative about a very important issue affecting the PWS community. Read below to learn about this issue then click the button at the bottom to be taken to a pre-written letter. Fill in your name, street address, zip code, phone, email and hit send. The Biggest Threat to...
Caregivers are a critical piece to helping our loved ones with PWS live successful lives. Whether those caregivers come into our home or meet our loved ones in the community, their attention to their safety, dedication to their needs and development, and pursuit of our loved one’s happiness is a balm to the challenges of...
Question: Female, 58 years old, Deletion subtype My daughter will be 58 on Jan. 14, 2025. I am interested in any information on older PWS persons. She lives in Canada. We have no APWSA anymore. She seems to be having issues with memory, confabulation, and possibly early dementia. Is this normal? Nurse Lynn’s Response: Memory...
Traveling to national parks, whether it’s an epic cross-country trip or just outside of your town, is a favorite past time of many families. The beautiful scenery, leisure outdoor time, and fun activities inspire the trek and can create many fond memories. Despite the allure of these beautiful, recreational parks, the entrance fees may be...
As we prepare for the 11th Annual Hot Stove Dinner—happening Saturday, March 22, 2025, 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 Love, tells...
Question: Male, 6 years old, Deletion subtype Understanding my son would have a speech impairment and rarely made sounds as a baby we took the chance with ASL, American Sign Language, as a tool to teach him expressive language. Early on when he was physically able to start making signs, we saw that our son...
submitted by Sammi Hatfield Cam is our 10-year-old son adopted from China at 26 months. Cam’s story of survival is amazing, from being given up on by an orphanage unable to meet his needs to being fostered by an American couple working in China at 7 months old until we could bring him home 15...
TREND Community released its latest report on PWS and Emotional and Behavioral Patterns. This report analyzed conversations parents and caregivers were having on the topic of emotional and behavioral issues. In a testament to the dedication and connection of parents to their loved ones, the largest primary emotion category was “Happiness”, with “Love” being the...
We are thrilled to celebrate a major step forward for individuals living with Prader-Willi syndrome (PWS) and the broader rare disease community in Illinois! On February 4, 2025, SB1651, filed by Senator Morrison, and HB2541, filed by Representative La Ha, were introduced—marking a critical move toward better support and services for those affected by PWS. ...
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.
