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...
Calling Minnesota PWS Families
The Minnesota Drug Formulary Committee Meeting will be open at 9 AM CT on Wednesday, Sept. 17, 2025. Here’s how you can help: The Drug Formulary Committee 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 of the...
Volunteer Spotlight: A Grandparent with a Heart of Gold
submitted by Melanie Zalman Donna Stephens, grandmother to Samuel (living with PWS) has volunteered with PWSA the last several years! She attended the 2023 DC Fly-In as a PWS grandparent advocate and has met with elected officials representing Louisiana. She was an integral part of our recent 2025 International PWS Conference in Phoenix, AZ, making...
Journey of Hope Gala Honoree Spotlight: Merlin Butler, MD, PhD, FFACMG
This year, as PWSA | USA celebrates 50 years of hope, advocacy, and impact, we’re proud to recognize the pioneers and visionaries who helped lead the way. In the months leading up to our Journey of Hope Gala in St. Louis, MO, we will be sharing a series of blog spotlights to honor the 12 incredible individuals being recognized...
Journey of Hope Gala Honoree Spotlight: Jim Kane
This year, as PWSA | USA celebrates 50 years of hope, advocacy, and impact, we’re proud to recognize the pioneers and visionaries who helped lead the way. In the months leading up to our Journey of Hope Gala in St. Louis, MO, we will be sharing a series of blog spotlights to honor the 12 incredible individuals being recognized...
Journey of Hope Gala Honoree Spotlight: Dr. Vanja Holm
This year, as PWSA | USA celebrates 50 years of hope, advocacy, and impact, we’re proud to recognize the pioneers and visionaries who helped lead the way. In the months leading up to our Journey of Hope Gala in St. Louis, MO, we will be sharing a series of blog spotlights to honor the 12 incredible individuals being recognized...
Journey of Hope Gala Honoree Spotlight: Lota Mitchell, MSW
This year, as PWSA | USA celebrates 50 years of hope, advocacy, and impact, we’re proud to recognize the pioneers and visionaries who helped lead the way. In the months leading up to our Journey of Hope Gala in St. Louis, MO, we will be sharing a series of blog spotlights to honor the 12 incredible individuals being recognized...
Journey of Hope Gala Honoree Spotlight: Jim and Joan Gardner
This year, as PWSA | USA celebrates 50 years of hope, advocacy, and impact, we’re proud to recognize the pioneers and visionaries who helped lead the way. In the months leading up to our Journey of Hope Gala in St. Louis, MO, we will be sharing a series of blog spotlights to honor the 12 incredible individuals being recognized...
Ask Nurse Lynn: Colon Cancer Screening, Why and How
Question: Female, 67 years old, Deletion subtype My sister with PWS (very high functioning) is scheduled for her first colonoscopy. It is just routine and there is no family history of colorectal cancer. Is this procedure absolutely necessary? Any additional advice or recommendations if the procedure is necessary. Nurse Lynn’s Response: Routine colon cancer screening...
Michigan PWS Families – Your Voices are Needed!
The Michigan Pharmacy and Therapeutics Committee will hold a Drug Utilization Review (DUR) Board meeting on September 2, 2025, at 6 PM. Please submit your comment by August 20, 2025. Here’s how you can help: The DUR Board needs to hear directly from you – the parents, caregivers, and family members who understand the real-life...
The Importance of Caring for your Relationship
submitted anonymously No one tells you that the moment your child receives a life altering diagnosis your entire world shifts, including your marriage. Raising a child with a disability is beautiful, powerful, and deeply meaningful, but it’s also exhausting, emotional, and never ending. For many families, the stress and pressure don’t just challenge the child,...
PWS Advocates Participate in Rare Across America Congressional Meetings
Rare Across America, sponsored by the EveryLife Foundation for Rare Diseases, is held every August when Congress is on summer recess and our elected officials are in their home districts. It is an opportunity for advocates to meet with their Members of Congress and staff at their in-district offices and educate them on the issues...
Journey of Hope Gala Honoree Spotlight: Janalee Heinemann
This year, as PWSA | USA celebrates 50 years of hope, advocacy, and impact, we’re proud to recognize the pioneers and visionaries who helped lead the way. In the months leading up to our Journey of Hope Gala in St. Louis, MO, we will be sharing a series of blog spotlights to honor the 12 incredible individuals being recognized...
Journey of Hope Gala Honoree Spotlight: Dr. Moris Angulo, MD
For more than three decades, Dr. Moris Angulo, MD, has been a tireless champion for people with Prader-Willi syndrome (PWS), in exam rooms, at conferences, across continents, and in the hearts of the families he serves. Born in the small town of El Tránsito, El Salvador, Dr. Angulo’s journey to becoming a board-certified pediatrician, medical...