Prader-Willi Syndrome Association USA - Supporting Families
Learn about Prader-Willi Syndrome at PWSA USA. Find resources, support, and information for families affected by Prader-Willi Syndrome.| Prader-Willi Syndrome Association | USA
Question: Male, 17 years old, unknown subtype What are your thoughts on Risperidone? My son has been on Abilify for over 3 years but is now starting to become more agitated as time goes on. The Doctor is suggesting Risperidone to help his extreme impulsive outburst about very small things that he is dealing with. […] The post Ask Nurse Lynn: Switching from Abilify to Risperidone appeared first on Prader-Willi Syndrome Association | USA.| Prader-Willi Syndrome Association | USA
Note: This event is hosted by Soleno Therapeutics and shared by PWSA | USA as an educational opportunity for the Prader-Willi syndrome (PWS) community. Families, caregivers, and professionals are invited to join Soleno Therapeutics for an upcoming educational webinar discussing Prader-Willi syndrome and VYKAT™ XR (diazoxide choline), a treatment for individuals 4 years and older […] The post You’re Invited: Webinar on Prader-Willi Syndrome and VYKAT™ XR (diazoxide choline) appeared fi...| Prader-Willi Syndrome Association | USA
contributed by Stacy Ward, PWSA | USA CEO On October 18, we gathered in the Malt Room at Brown’s Brewing Company in Troy, NY for an unforgettable evening: Cocktails for a Cause: A Night for Prader-Willi Syndrome. It was a night filled with music, laughter, and a few heartfelt tears — but most importantly, it […] The post Cocktails for a Cause: A Night of Community, Celebration, and Impact appeared first on Prader-Willi Syndrome Association | USA.| Prader-Willi Syndrome Association | USA
Question: Female, 40 years old, deletion subtype Can a woman with PWS have a baby? Nurse Lynn’s Response: Most women with PWS cannot have babies because their bodies don’t make enough of the hormones needed for regular periods and pregnancy. But there have been a few rare cases where women with PWS have gotten pregnant […] The post Ask Nurse Lynn: Females with PWS and Fertility appeared first on Prader-Willi Syndrome Association | USA.| Prader-Willi Syndrome Association | USA
October 1-4, 2025, PWSA Egypt and the Middle East held their first ever PWS event in the heart of Egypt. Thanks to a grant from Friends of IPWSO, the Nile Hope Workshop and Camp was able to host over 120 people (30 families) from across the Arab world, both virtually and in-person, for an incredibly […] The post PWS Families Gather in Egypt for Nile Hope Workshop and Camp appeared first on Prader-Willi Syndrome Association | USA.| Prader-Willi Syndrome Association | USA
Fifty years ago, on November 29, 1975, the Individuals with Disabilities Education Act (IDEA) was signed into law. This law ensures the rights of individuals with special needs and disabilities to receive a free appropriate public education (FAPE), including our loved ones with Prader-Willi syndrome. Without this law, many, perhaps most, of our loved ones […] The post Cuts to Department of Education Affect Individuals with PWS – Call to Action! appeared first on Prader-Willi Syndrome Asso...| Prader-Willi Syndrome Association | USA
On Saturday, October 11, 2025, families and friends gathered at the Trumbull Career and Technical Center in Warren, Ohio, for the 2nd Annual Dance Silly for Prader-Willi, a festive Halloween-themed fundraiser hosted by Michele Hampton and her family. For Michele, whose three-year-old daughter Jayda is living with Prader-Willi syndrome (PWS), Dance Silly for Prader-Willi is […] The post A Halloween Party with Heart: Dancing Silly for Prader-Willi appeared first on Prader-Willi Syndrome Assoc...| Prader-Willi Syndrome Association | USA
PWSA | USA is excited to celebrate a powerful new commitment from Soleno Therapeutics, a company already making history in the Prader-Willi syndrome (PWS) community. Following the FDA approval of VYKAT™ XR (diazoxide choline extended-release tablets), the first-ever treatment for hyperphagia in PWS, Soleno has announced plans to invest up to $5 million in grant […] The post Soleno Therapeutics to Invest $5 Million in Research Toward a Potential Cure for Prader-Willi Syndrome appeared firs...| Prader-Willi Syndrome Association | USA
Question: Male, 40 years old, Deletion subtype My son turned 40 in Dec 2025. I feel his memory is getting shorter. Forgetting a lot. Also, talking to himself. He never really did this, but it seems to be doing it a lot lately. Is this normal for adults. We are going to his primary soon. […] The post Ask Nurse Lynn: New Forgetfulness and Neurological/Psychological Concerns appeared first on Prader-Willi Syndrome Association | USA.| Prader-Willi Syndrome Association | USA
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 […] The post Ask Nurse Lynn: Testosterone Treatment in PWS appeared first on Prader-Willi Syndrome Association | USA.| Prader-Willi Syndrome Association | USA
Learn about Prader-Willi Syndrome at PWSA USA. Find resources, support, and information for families affected by Prader-Willi Syndrome.| Prader-Willi Syndrome Association | USA
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| Prader-Willi Syndrome Association | USA
