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Category: Blog

Navigating Summer Celebrations

Summer is here! This means different things to different families, often depending on the age of your loved one with PWS. This time may bring a mix of relief and worry, a freeing of the schedule and a burdening of supervision needs. While every family is different with their own unique needs during this time...

Hippotherapy and PWS

Contributed by Melanie Zalman When my daughter was just a bit older than 2, someone on the Birth-Three Facebook group shared phenomenal photos of a visit they made to a horse barn with their family. Cut to a super sweet snapshot of their little hypotonic kiddo on a HUGE, majestic horse caught my attention. I...

Ask Nurse Lynn: Weight, BMI, Blood Sugar Levels

Question: Male, 27 years old, Deletion subtype What would a critically hazardous weight be for someone with PWS that’s height is 4’11”? Also, what is considered a good range for their blood sugar levels in PWS with diabetes? Nurse Lynn’s Response: When caring for someone with PWS, it’s important to remember that body weight alone...

Aardvark Therapeutics HERO Trial: U.S. Sites Now Open

Aardvark Therapeutics recently 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). This randomized, double-blind, placebo-controlled trial is an important step toward identifying a potential new treatment option for the PWS community, and...

two photos of a very young girl with Prader-Willi syndrome (PWS)

Spotlight on Hope: Ada Thrives and Shines

submitted by Caitlin Heckman, mom to Ada (1, living with PWS) We received Ada’s PWS diagnosis when she was one month old, and, like everyone in this community, our world was turned upside down. This condition we previously had no idea existed became the center of our attention. The NICU doctor who gave us her...

photo of Nurse Lynn, the advice nurse for Prader-Willi syndrome with the title of Osteoporosis, Calcium, and Vitamin D

Ask Nurse Lynn: Osteoporosis, Calcium, Vitamin D

Question: Female, 42 years old, UPD subtype My question is about treatment for osteoporosis. My sister, to my knowledge, has never had any hormone replacement. She is obese, BMI 38, and the only abnormal lab done by her gynecologist was testosterone, which was “below the technical range of the assay.” Her vitamin D levels are...

How To Join a PWS United Livestream on Podbean

We have an exciting opportunity to livestream a session at our 2025 International PWS United in Hope Conference! If you haven’t listened to PWS United yet, we have quite a collection of PWS-related episodes, from research to advocacy, family support, and more. We will be recording some of the upcoming conference sessions to share with...

photo of Nurse Lynn promoting an article on hCG and hypogonadism for boys with Prader-Willi syndrome (PWS)

Ask Nurse Lynn: hCG and Hypogonadism

Question: Male, 8 months old, unknown subtype We want to give hCG injections to our son, not just to avoid the surgery but for future benefits as well. His endocrinologist and urologist refused to give hCG, even after requesting so many times. I’m from the UK, and the NHS (National Health Service) have stopped giving...

photo of a man and his wife who have both contributed to the Prader-Willi syndrome community

In Memory of Jim Gardner

We are deeply saddened to share the news of the passing of Jim Gardner, a beloved and instrumental figure in the history of PWSA | USA. Jim’s unwavering dedication and tireless advocacy laid the foundation for much of the work we continue today. As one of the organization’s earliest champions, Jim helped shape PWSA |...

Aardvark Therapeutics Launches HERO, A Phase 3 Trial of ARD-101 for Treatment of Hyperphagia in PWS; Now Enrolling Participants in the US

Aardvark Therapeutics recently launched HERO, a global Phase 3 randomized, double-blind, placebo-controlled clinical trial of ARD-101. ARD-101 is a novel, orally administered investigational therapy being studied to see if it can reduce excessive hunger and food-seeking behaviors in individuals with PWS. About the HERO Trial As part of the HERO study, participants will be randomly...

genetics and weight gain for Prader-Willi syndrome (PWS)

Ask Nurse Lynn: Genetics and Weight Gain

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...

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