Prader-Willi Syndrome Association | USA
PWSA | USA
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Latest posts
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Ask Nurse Lynn: Accelerated Aging in Prader-Willi Syndrome
Question: Male, 65 years old, unknown subtype My brother just turned 65 with PWS. Over the past 18 months he has gone from walking 3 miles daily and swimming, very active, but now barely able to walk 20 feet. He is weak and falling and then can’t get up. He has seen a spine…
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Give the Gift of Hope This Holiday Season: PWSA | USA’s 2026 Angel Drive Campaign
The 2026 Angel Drive (November 1 to December 31) is PWSA | USA’s largest annual fundraising campaign, dedicated to bringing hope and essential support to families and individuals impacted by Prader-Willi syndrome. Click Here to Make an impact! Everyone connected to Prader-Willi…
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Parenting for Interdependence
contributed by Anne Fricke, mom to Freya (15, with PWS) and based on information from the 2023 United in Hope PWS Convention presentation, “Parenting for Interdependence” by Amy McDougall, M.S. and Noelle McDougall I have a 15-year-old daughter with PWS who plans on going to…
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PWS Moms’ Retreat: An Uplifting Pause
The PWS Mom’s Retreat in Park City, Utah was a wonderful opportunity for 100 moms of loved ones with PWS to come together for laughter, tears, comfort, support, and connection. Nestled amongst the beautiful Wasatch mountains, some moms relaxed by the terrace fire pits, some…
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Ask Nurse Lynn: Communication and Speech Milestones
Question: Female, 2 years old, deletion subtype Hi, I am curious about what speech milestones look like for our kiddos. My daughter is 2 and has been in outpatient speech services weekly as well as early intervention services. She knows and uses over 5 different ASL signs to…
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FDA Lifts Clinical Hold on ARD-101 for Hyperphagia in Prader-Willi Syndrome
On Thursday, October 22, 2026, Aardvark Therapeutics announced that the U.S. Food and Drug Administration (FDA) has lifted the clinical hold on its Investigational New Drug application for ARD-101, an oral, small-molecule investigational drug being studied for hyperphagia in…
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Ask Nurse Lynn: Growth Hormone: Daily vs Weekly Injections
Question: Female, 8 years old, imprinting subtype Hi! My daughter is currently taking omnitrope, but I stumbled upon skytrofa. I like that it’s a once-weekly injection, is preservative free and has shown a higher growth increase in trials for kids with growth hormone deficiency.…
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Advocacy in Action: PWSA | USA on the National Stage
It’s been an incredibly busy and exciting few weeks for PWSA | USA’s Advocacy Team! From Washington, D.C., to Boston, we’ve been working to elevate the voices of individuals and families living with Prader-Willi syndrome (PWS), strengthen partnerships across the rare disease…
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TREND Report: Anxiety and PWS
TREND Community released its latest report on Anxiety and PWS. The dataset is drawn from conversations within PWS Connect, a private Discord community launched in April 2024. The community is made up primarily of caregivers of children and individuals living with PWS. At the…
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Ask Nurse Lynn: Diabetes and Medication
Question: Male, 39 years old, unknown subtype My son is 39 and has Type II diabetes. We had it under control with diet, and prescriptions for Metformin, Actos, Januvia, &Jardiance. He is overweight. In December 2024 a new endocrinologist took him off of Januvia and Actos and put…
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PWS Illinois Families! You’re Invited to a FREE Community Day in Chicago
Soleno Therapeutics, a Neurocrine Biosciences Company, is pleased to invite our community to a FREE Prader-Willi Syndrome (PWS) Community Day in Chicago taking place on Saturday, Oct 17th at the Kohl Children’s Museum (2100 Patriot Boulevard, Glenview, IL 60026) for a day of…
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Brace Yourself: How One Family Said Goodbye to Scoliosis Braces
contributed by Kat Lucero, mom to Ronan (living with PWS) and PWSA | USA Board Member I think the day I discovered that Ronan had scoliosis was one of the saddest and most eye-opening days of my journey as his mom.It was the moment I realized that I couldn’t protect him from…