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...
Category: Blog
Ask Nurse Lynn: Supplement, Medication for Skin Picking
Question: Female, 61 years old, Deletion subtype Are there any proven drugs to help with skin picking? My daughter stopped skin picking when she was about 12 and in the past year, she has started again. She cannot seem to stop. I have talked to all of her doctors about it and no one seems...
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...
PWSA | USA Advocacy Ambassadors Join Forces with Patients Rising on Capitol Hill
Six of our dedicated PWSA | USA Advocacy Ambassadors (Dorothea Lantz, Elaine Towle, Jessica Kempa, Sheri Mills, Michelle Torbert and Jennifer Garzia—also joined by her family, including her son Rocco who is 20 years old living with PWS) traveled to Washington, D.C. last week to take part in Patients Rising’s 4th annual “We the Patients”...
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...
Adults with PWS Advisory Board Spotlight: Brooke Fuller
Brooke Fuller is 51 years old and lives with Prader-Willi syndrome. She lives in Michigan and has been a board member for PWSA | USA since the beginning. In an effort to learn more about our adults with PWS, and to shine a light on their lives and experiences, we asked our Advisory Board members...
Ask Nurse Lynn: Understanding and Mitigating Potential Psychosis
Question: Female, 6 years old, UPD subtype We have seen a lot of information about PWS patients with UPD having a higher risk of developing psychosis typically by age 20. We have recently put our daughter into a mental health/behavioral therapy program where she will meet with a therapist once a month. This way as...
Adults with PWS Advisory Board Spotlight: Abbott Philson
Abbott Philson is 41 years old and lives with Prader-Willi syndrome. He lives in Maine and has been a board member for PWSA | USA for 25 years. In an effort to learn more about our adults with PWS, and to shine a light on their lives and experiences, we asked our Advisory Board members...
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...
Hummus, Tahini, and PWS Awareness
submitted by Sarah Kasaby, mom to Khaled (living with 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...
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...
Adults with PWS Advisory Board Spotlight: Kate Kane
Kate Kane is 43 years old and lives with Prader-Willi syndrome. She is legally a resident in the state of Maryland but resides in a home in Wisconsin for people with PWS. Kate has been a board member for PWSA | USA for over 15 years. In an effort to learn more about our adults...
Ask Nurse Lynn: Anemia and Iron Supplementation
Question: Female, 22 years old, unknown subtype Hello, my daughter has severe rectal picking issues to the point she is anemic. Got it under control in June 2023. Latest labs show anemia Ferritin at 6 Iron total at 13 hemoglobin at 11.2…doc said increase iron supplement to 325mg. My concern is it’s a new doc...
Adults with PWS Advisory Board Spotlight: James Towle
James Towle is 39 years old and lives with Prader-Willi syndrome. He resides in Massachusetts and is “proud and honored to have been given the opportunity to serve on the board this past January 2025.” In an effort to learn more about our adults with PWS, and to shine a light on their lives and...
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...
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...
Adults with PWS Advisory Board Spotlight: Trevor Ryan
Trevor Ryan is 35 years old and lives with Prader-Willi syndrome. He resides in Arizona and has been a board member for 10 years. In an effort to learn more about our adults with PWS, and to shine a light on their lives and experiences, we asked our Advisory Board members some questions. Below are...
Adults with PWS Advisory Board Spotlight: Conor Heybach
Conor Heybach is 44 years old and lives with Prader-Willi syndrome. He resides in Chicago and has been on the Adults with PWS Advisory Board since 1996. In an effort to learn more about our adults with PWS, and to shine a light on their lives and experiences, we asked our Advisory Board members some...
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...
Adults with PWS Advisory Board Spotlight: Shawn Cooper
Shawn Cooper is 51 years old and lives with Prader-Willi syndrome. She resides in Georgia and has been on the Adults with PWS Advisory Board since it was first developed. In an effort to learn more about our adults with PWS, and to shine a light on their lives and experiences, we asked our Advisory...
2025 Family Conference Attendees: We Need Your Feedback
The United in Hope 2025 PWS Conference schedule is live! To help us plan effectively, please let us know which sessions you’re most interested in attending. This isn’t an RSVP, just a quick way for us to gauge excitement and prepare accordingly. It only takes about 2 minutes. Please choose one session you’re most interested...