Trevor Ryan is 35 years old and lives with Prader-Willi syndrome. He resides in Arizona and has been a board member for 10 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 some questions. Below are...
Conor Heybach is 44 years old and lives with Prader-Willi syndrome. He resides in Chicago and has been on the Adults with PWS Advisory Board since 1996. 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 some...
PWS Mom Jamie Caldwell, has found a unique way to celebrate her daughter, Lydia (3, living with PWS) and PWS Awareness Month. “We started working with this project after Kristina (Rieger), owner/founder of Dalya’s Dreamers, had posted in our local special needs mom group seeking models of her dresses. As a mother with a daughter...
Question: Female, 7 years old, Unknown deletion Does the identification of PWS by genetic testing PWS give conclusive results? In other words, your child either has or doesn’t have PWS? Does a child with PWS gain weight event if her caloric intake is restricted? Would a “less than normal” caloric intake still result in weight...
Shawn Cooper is 51 years old and lives with Prader-Willi syndrome. She resides in Georgia and has been on the Adults with PWS Advisory Board since it was first developed. 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...
The United in Hope 2025 PWS Conference schedule is live! To help us plan effectively, please let us know which sessions you’re most interested in attending. This isn’t an RSVP, just a quick way for us to gauge excitement and prepare accordingly. It only takes about 2 minutes. Please choose one session you’re most interested...
submitted by Dorothea Lantz, PWSA | USA’s Director of Community Engagement PWSA | USA Advocacy Community Update – Capitol Hill Recap (May 5–8, 2025) From May 5th–8th, six of our PWSA | USA Advocacy Ambassadors joined forces with the Council of Parent Attorneys and Advocates (COPAA) and key partners from the rare disease industry to...
Dini Rao, mom to Ayoni (8, living with PWS) hosted a very successful United We Brunch fundraiser for PWS Awareness Month. Desi Tea for Prader-Willi was on May 4th at the Rao home in Maryland. Neighbors, community members, and local PWS families gathered together for samosas, pakoras, chai, PWS awareness, and community. “When we first...
Question: Male, 18 years old, UPD subtype My son struggles with psychosis/schizophrenia for 1.5 yrs. None of the antipsychotics applied reduced the symptoms. He is in a miserable situation. The doctors want to use Clozapine as last resource. Is this a drug used frequently in people with PWS and psychosis? Do you have any suggestions...
Pennsylvania Families and Friends! There’s an Easy and Delicious Way to Support PWSA | USA on May 15 – PWS Awareness Day On Thursday, May 15, 2025, several restaurants across Pennsylvania are generously donating a portion of their sales to PWSA | USA in honor of Prader-Willi Syndrome Awareness Day. Whether you dine in, take out, or order online,...
submitted by Lisa Graziano, proud mom to Cameron (26, living with PWS) Cameron Graziano, age 26 with PWS deletion subtype, earned his Black Belt in Tae Kwon Do when he was 17 years old. His passion for Karate started at age 9 when his ability to balance on one foot did not exceed a count...
Victor Penta is 31 years old and lives with Prader-Willi syndrome. He resides in Arizona and has been on the Adults with PWS Advisory Board since 2019. 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 some...
Question: Female, 2 years old, unknown subtype My daughter has had a very high fever for the last two days. There are lots of viral things going around here so I am thinking that it is that. Is it normal that kids with PWS get fevers? I have read before that usually they don’t break...
On Tuesday, April 22, PWSA | USA and FPWR offered a PWS Community Town Hall for caregivers and guardians to hear more about people’s lived experiences with VYKAT XR. Experiences were shared from individuals who participated in the Phase 3 clinical trial of VYKAT XR, and attendees were able to ask questions of each other....
Hyperphagia, the relentless hunger that those living with Prader-Willi syndrome (PWS) experience, remains one of the most challenging and life-altering symptoms for individuals and families. But a promising investigational drug called ARD-101 is offering hope. In our April 29th episode of PWS United, Aardvark Therapeutics’ Dr. Tien Lee, M.D., CEO and Founder, and Dr. Manasi...
We asked some of our parents on staff to share their experiences with occupational therapy since April is National Occupational Therapy Month! Occupational therapy (OT) is a standard of care for individuals with Prader-Willi syndrome. If your loved one does not yet receive OT, please reach out to their doctor or school to learn how...
Question: Female, 7 years old, unknown subtype My granddaughter’s weight is out of control. I want help with exercise and eating and helping her lose weight ….and tips on helping her in the situations she lives. Nurse Lynn’s Response: Managing weight in a child with PWS can be challenging, but with the right strategies, you...
What a night! On April 3rd, the Dorson Family, Pia, Dave, Zahra, Ronin, and Zoe, hosted the inaugural Zahra’s Night of Light at the Historic Hall in Bedford, NY. The evening brought together family and friends for a beautiful celebration benefiting children like Zahra who are living with Prader-Willi syndrome. Guests enjoyed live entertainment, delicious...
Contributed by Kristi Larsen, MS, OTR/L, Occupational Therapist, Oakwood Village Rehab Services April is National Occupational Therapy (OT) Month, a time to recognize the vital role occupational therapists and occupational therapy can play in helping people of all ages develop skills, confidence, and autonomy in daily life. Kristi Larsen, MS, OTR/L, is a licensed and...
*In the interest of space, please note that when we use the term “mother”, we not only refer to biological or adoptive mothers, but also those female figures who are an outstanding, constant, and loving presence in your loved one’s life. Mothers are incredible! Often the life-force of the family; the caretaker, nurturer, nurse, teacher,...
Question: Male, 38 years old, Unknown Subtype I am an LPN. We currently have an individual with PWS, we are running into several problems, one of the biggest being hygiene. This individual refuses to shower, averaging about 1 weekly. He has a very large, growing rash across his abdominal folds. While we are here to...
We look forward to learning more about our Adults with PWS Advisory Board members. Please fill out the form below and share some photos if you’re willing.
Question: Female, 42 years old, Deletion My daughter is a severe picker, wondering if you have any advice that would help? Nurse Lynn’s Response: Skin picking is a common and challenging behavior in individuals with PWS. Here are some strategies that might help a sample sensory plan is also included. Environmental & Behavioral Strategies 1....
The Prader-Willi Syndrome Association | USA (PWSA | USA) is a nonprofit organization formed in 1975 to enhance the quality of life of those affected by Prader-Willi syndrome (PWS) through research, family support, and advocacy. The purpose of this request is to solicit applications for research projects whose findings will directly impact individuals living with...
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.
