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....
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...
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. We are proud to offer scholarships of up to $25,000 USD to support providers in enhancing their understanding of Prader-Willi...
contributed by Mallory Servais If you’re reading this, I’m guessing you have a sibling with Prader-Willi Syndrome (PWS), which means you probably get what it’s like to live in a house where your rules revolve around food. And if you have a sibling like mine, emotions can go from zero to one hundred in seconds....
contributed by Louis Schutz, father to Laura (38, living with PWS) What steps did you take to prepare for her life as an adult? In her teens, the rough behaviors became extreme. She was failing on many levels, even with doing everything we could. Placement felt like an option. Luckily an opening became available at...
Question: Female, 23 years old, UPD subtype My 23-year-old daughter with UPD is just now developing some food-foraging behaviors. I am assuming this is not uncommon, but I am just wondering if this is typical to start at this age. We have never locked our cabinets because we never had to, so I am wondering...
Date: Wednesday, April 16, 2025Time: 9:15 AM PT | 12:15 PM ETLocation: Virtual via ZOOM The Prader-Willi syndrome (PWS) community has reached a historic milestone – VYKAT XR (formerly known as DCCR in clinical trials) is now FDA-approved as the first-ever treatment for hyperphagia in PWS. To help families, caregivers, and healthcare providers understand what...
submitted by Melissa Karzazi, mom to Samir So… let me tell you about my little IVF miracle. The diagnosis of being infertile seemed so final. We tried to get pregnant for 5 years before turning to IVF. We chose not to do genetic testing prior to implantation because, at 35 years old, in the IVF...
Submitted by Anne Fricke, mom to Freya (13, living with PWS) When I first learned about the hyperphagia aspect of PWS, I thought of my garden—the hours of sweat and love I have put into it, the ease of anxiety it offers me, and the delicious bounty my family receives from it. I was worried...
We are thrilled to share with you this BREAKING NEWS for the PWS Community! The U.S. Food and Drug Administration (FDA) has officially approved VYKAT™ XR (diazoxide choline extended-release tablets, formerly referred to as DCCR) as the first-ever treatment for hyperphagia in Prader-Willi syndrome. This is a monumental victory for individuals with PWS, our families, and the entire rare disease...
Question: Male, 4 years old, unknown subtype What if the growth hormone levels are high? Does my son still need to be on growth hormone? Nurse Lynn’s Response: Growth hormone therapy is a cornerstone of treatment for individuals with PWS. It helps promote growth, improve body composition, enhance muscle tone, and support overall metabolic and...
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...
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.
