Question: Male, 18 years old, Deletion subtype My son has low testosterone and is seeing an endocrinologist tomorrow to possibly start increasing this hormone. Is there anything I should look out for? He is at a good weight but has low energy. The primary doctor believes it could be because of the low testosterone. Any...
Calling Indiana PWS Families!
The Indiana Medicaid Drug Utilization Review (DUR) Board Meeting will be meeting October 17, 2025, starting at 10:00 AM EST. Here’s how you can help: The Indiana Medicaid 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...
Intervening with a Bully, One Family’s Experience
submitted by Anne Fricke, mom to Freya (13, living with PWS) October is National Bullying Prevention Month. One of the frustrating and sad realities of our society is that individuals with disabilities and special needs are more likely to be bullied, including our loved ones with PWS. It is essential that we, as parents and...
Journey of Hope Gala Recap: Celebrating 50 Years of PWSA | USA
On Friday, September 26, 2025, nearly 200 members of the Prader-Willi syndrome community gathered from across the country at The Ritz-Carlton, St. Louis to celebrate a milestone half a century in the making. Our 50th Anniversary Journey of Hope Gala was nothing short of extraordinary. It was a night filled with connection, laughter, legacy, and...
HERO Clinical Trial for ARD-101 Now Enrolling Open-Label Extension (OLE)
Earlier this year, Aardvark Therapeutics launched HERO, a global Phase 3 clinical trial investigating ARD-101, an innovative, orally administered treatment designed to help reduce hyperphagia (excessive hunger) and food-seeking behaviors in individuals with Prader-Willi syndrome (PWS). All patients who have completed treatment on the AVK-101-301 study through Week 12/End of Treatment will have the option to join...
Calling Missouri PWS Families!
The Missouri Rare Disease Advisory Council Meeting will be meeting October 8, 2025 from 10:30 AM – 2 PM CDT. Here’s how you can help: The Missouri Rare Disease Advisory Council needs to hear directly from you – the parents, caregivers, and family members who understand the real-life impact of hyperphagia (excessive hunger) in PWS....
Ask Nurse Lynn: Stretch Marks with Estradiol
Question: Female, 13 years old, Deletion subtype My daughter started the estradiol patch about 4 months ago. She hasn’t really gained much weight or gotten bigger, but she is getting stretch marks across her butt and her upper thighs. Is this common with estrogen spikes or does it have something to do with PWS? Is...
Understanding P&T Committees and DUR Boards
Why do P&T Committees and DUR Boards Matter for PWS Treatments? For families living with Prader-Willi syndrome, access to new therapies isn’t just about FDA approval. Once a drug is approved, there’s another critical step that determines whether patients can actually receive treatment: coverage decisions made by Pharmacy & Therapeutics (P&T) Committees and Drug Utilization...
Acadia Shares Results of Phase 3 Carbetocin Trial: Primary Endpoint Not Met
On Wednesday, September 24, 2025, Acadia Pharmaceuticals shared an update on their Phase 3 COMPASS PWS trial, which evaluated intranasal carbetocin (ACP-101) for hyperphagia (excessive hunger) in children and adults with Prader-Willi syndrome (PWS). The trial did not meet its primary endpoint of improving scores on the Hyperphagia Questionnaire for Clinical Trials (HQ-CT) from baseline...
Ask Nurse Lynn: Feeding Tube for Adult
Question: Female, 69 years old, unknown subtype I am guardian for my sister who will be 69! It’s been a rough road for my parents since there was little knowledge about PWS. She currently lives with a SLP caregiver and they are a Godsend. While she has a host of typical PW physical challenges, the...
Rising Star in the PWS Community and Beyond
At PWSA | USA, we are consistently impressed with how our families show up in support and spread awareness of our rare disease. Whether we’re speaking in a small town classroom or presenting from podiums on a national stage, every presentation, every shared pamphlet, every question answered, brings more awareness and safety for our loved...
Adults with PWS: Living a Happy, Healthy Life
Submitted by Emma Niedermeyer, 44, living with PWS Emma is a 44-year-old individual living with PWS in Oregon. She lives in a group home but “is independent with some supports.” Below are the responses she submitted for our PWS in Adulthood blog series. What steps were taken to prepare for life as an adult? My...
Affecting Sleep with PWS
Question: Female, 22 years old, Deletion subtype My daughter is not sleeping…day or night. She sleeps maybe 2 hours at night and no naps. That means I don’t sleep. We have tried OTC and Ambien, and they don’t work. We need help, I am emotionally and physically exhausted. I will reach out to her psychiatrist...
Honoring the Residential Providers in the PWS Community
The Professional Providers Advisory Board (PPAB)—often referred to as the Residential Advisory Board—gives voice to those who support adults and children with PWS in residential settings. Their daily work ensures that quality care, dignity, and autonomy are realities for individuals with PWS. Just as early pioneers forged paths in residential care, today’s PPAB members build...
Ask Nurse Lynn: Nicotine Addiction in PWS
Question: Male, 43 years old, Deletion subtype Our 43-year-old PWS son has become addicted to nicotine which has become more important than food. He knows he will be fed but we restrict his access to vaping (his favorite) which leads him to all kinds of ways of getting it out of our control. So far,...
In Recognition of Direct Support Professionals
submitted by Stacy Ward, PWSA | USA CEO Each year, during National Direct Support Professional Week (September 7-13, 2025), we pause to celebrate the incredible individuals who dedicate their careers to supporting people with disabilities. At PWSA | USA, we know firsthand how essential these professionals are to the lives of children and adults living...
Grandparent Perspectives
Many of our families are blessed to have grandparents in their lives. Some grandparents live close by and are able to help with the practicalities of raising someone with PWS, like doctor appointments, therpay visits, and babysitting or supervising so the main caergivers can have a break. Other parents live far away but find those...
A Message from Soleno Therapeutics to the PWS Community
Soleno Therapeutics has released a statement to the PWS community regarding VYKAT™ XR (diazoxide choline) extended-release tablets, the first and only FDA-approved treatment for patients 4 years and older to address hyperphagia in Prader-Willi syndrome. In their message, Soleno reaffirms their commitment to safety, transparency, and partnership with the PWS community as VYKAT XR becomes...
Calling Alaska PWS Families
The Alaska Medical Assistance DUR Committee will be meeting virtually at 1 PM AKDT on Friday, Sept. 19, 2025. Here’s how you can help: The Alaska Drug Utilization Review 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...
Calling Montana PWS Families
The Montana Medicaid Drug Use Review Board will be meeting virtually from 1 PM – 5 PM MT on Wednesday, Sept. 17, 2025. Here’s how you can help: The Medicaid Drug Use Review Board needs to hear directly from you – the parents, caregivers, and family members who understand the real-life impact of hyperphagia (excessive hunger)...
Ask Nurse Lynn: Glucose Monitoring
Question: Male, 23 years old, unknown subtype I have PWS. I’m 23, 5’7″. I do not have diabetes, but my grandfather and dad do. I was wondering what my blood sugar should be every day. I just got a glucose monitor so I want to make sure I’m doing good. I do workout every single...
Honoring the Clinicians Who Guide Our Community
Contributed by PWSA | USA CEO Stacy Ward, MS, BCBA When you are raising or caring for someone with PWS the journey can feel overwhelming. What makes it a little lighter is knowing there are incredible clinicians, researchers, and specialists who have chosen to walk this road with us. At the heart of PWSA |...
The Evolution of PWSA | USA’s Logo: A Journey of Hope and Transformation
Since our founding in 1975, Prader-Willi Syndrome Association | USA (PWSA | USA) has been more than an organization. We have been a trusted voice, advocate, and lifeline for families and individuals affected by Prader-Willi syndrome. Just as our mission has grown and adapted to meet the needs of our community, our logo and tagline...
Ask Nurse Lynn: Anesthesia Safety and Concerns
Question: Female, 18 months old, UPD subtype My 18 month old daughter with PWS will be going in for tonsil shaving / possible adenoid removal in 2 weeks and this will be her first time under anesthesia for a procedure. The ENT performing the procedure is knowledgeable about PWS as he belongs to our PWS...