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.
Ask Nurse Lynn: Skin Picking Strategies
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....
Request for Prader-Willi Syndrome Research Grant Applications
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...
Prader-Willi Syndrome Clinical Scholarship Announcement
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...
What It’s Like to Have a Sibling with PWS
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....
A Loving School is Vital
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...
Ask Nurse Lynn: Food-Seeking Behaviors
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...
Free Live Webinar: Understanding VYKAT XR – The First FDA-Approved Treatment for Hyperphagia in PWS
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...
IVF Miracle
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...
With New Treatment Comes Renewed Hope
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...
PWS Breaking News! FDA Approves First-Ever Treatment for Hyperphagia in PWS
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...
Ask Nurse Lynn: Growth Hormone Levels
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...
Women in PWS: Moving Forward Together
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...
Staying Cool at Conference
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...
Ask Nurse Lynn: Respiratory Infections
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...
Take Action: Help Pass the Sunshine Genetics Act in Florida!
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...
Spotlight on Hope: Blessed by Micah’s Life
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...
New for PWS Awareness Month: Host a United We Brunch!
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...
Ask Nurse Lynn: Machines for Sleep Apnea
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 Report: Gastrointestinal Issues in the PWS Community
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...
Her Own Home with Family Nearby
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...
United for Change: PWSA | USA Advocates Make a Powerful Impact During Rare Disease Week 2025
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...
Ask Nurse Lynn: Interventions for Rectal Picking
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...
Reflections from Rare Disease Week Advocates
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...
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.
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.
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.
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.
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.