Prader-Willi Syndrome Association USA

01/14/2026

Want to know how we can improve outcomes for more people in our PWS Community? Come join the Colors of Hope group as they present findings from a series of Listening Sessions and surveys with the families of color affected by Prader-Willi Syndrome. The goal of this presentation is to create a shared understanding of the challenges and opportunities ahead.
Join us on Tues, Jan 27th at 8pm ET/5pm PT

Register to join the presentation: https://us02web.zoom.us/webinar/register/WN_IRBfvxT4R0SOU7x_Jfex_Q

01/14/2026

A great opportunity for PWS families.

Sleep challenges are a real — and often misunderstood — part of life with Prader-Willi syndrome.

Join us for Shedding Light on Sleep Disorders in Prader-Willi Syndrome, a webinar centered on caregiver experiences and clinical insight, with a focus on listening, learning, and understanding the real-world impact of sleep issues in PWS.

🗓️ Thursday, January 29, 2026
⏰ 12:00–1:00 PM EST

This is not a traditional lecture. It’s an honest conversation about what families see, feel, and wish they had known sooner — paired with guidance from clinicians who help translate lived experience into care.

RSVP here: https://www.eventcreate.com/e/sleep-disorders-pws-webinar

01/14/2026

Our latest from Ask Nurse Lynn. Read the blog, find links to valuable resources, and submit your own non-emergency medical question at https://www.pwsausa.org/category/ask-nurse-lynn/

01/13/2026

Harmony Biosciences shared a company update this week that includes news for the PWS community: the TEMPO Phase 3 clinical trial of pitolisant in Prader-Willi syndrome remains on track, with topline data expected in the second half of 2026.

Pitolisant is already FDA-approved for narcolepsy, and the TEMPO study is evaluating its potential to treat excessive daytime sleepiness and related symptoms in individuals with PWS. While this is not an approval announcement, it’s an encouraging sign of continued progress and investment in PWS-focused research. PWSA | USA will continue to share updates as they become available.

Read Harmony’s full press release here: https://ir.harmonybiosciences.com/news-releases/news-release-details/harmony-biosciences-guides-over-1-billion-wakixr-revenue-2026

01/13/2026

The Global PWS Registry, sponsored by FPWR and hosted by NORD, is a database of information about individuals with Prader-Willi syndrome. Informed by caregivers of individuals with PWS, the Global PWS Registry, now in its 10th year, is one of the most powerful tools we have to understand PWS. The registry has guided research, played a crucial role in advancing new drugs and therapies, shaped clinical trials, informed medical guidelines, and has helped elevate the voices of the PWS community.

Stacy Ward, PWSA | USA's CEO, sat down with key figures of the Global PWS Registry; Dr. Theresa Strong, Director of Research for FPWR, Dr. Jessica Bohonowych, Associate Director of Research for FPWR, Lisa Matesevak, Study Coordinator for FPWR, and Lynn Garrick, Medical/Research Coordinator for PWSA | USA. They discussed the many surveys available and the importance of gathering this data from families. Not only are these surveys helping to inform the medical and research community on the many nuances of PWS, but it can also serve as a living medical record for families. The Global Registry has been updated to a more intuitive platform, making it easier for families to complete surveys and view the information submitted by the community. They also discuss the exciting implications for the upcoming VYKAT survey which will help document in real-time the effects of the first-ever FDA approved treatment for hyperphagia in PWS.

To learn more and sign up for the registry, please visit https://pwsregistry.org/

Listen to this episode at https://pwsunited.podbean.com/

01/12/2026

January is Mental Wellness Month and we're asking members of our Adults with PWS Advisory Board how they support their mental wellness. Check out our social media every Monday and Thursday in January for their tips.

We are including a prompt with these tips to help continue the conversation with your loved one with PWS. If you're both willing, please share their response in the comments below to help others find ideas on how they can support their own mental wellness. We will be compiling responses into a blog to keep on our website for families interested in learning more ways to support their own mental wellness.

01/11/2026

The Prader-Willi Florida Chapter is excited to invite you to a special Family Zoo Day at Zoo Miami on February 21, 2026, from 10 AM - 5 PM.

Join families from the Florida chapter of PWSA | USA at 10 AM at Zoo Miami, where together you'll enjoy a fun, inclusive, and community-building experience as families explore the zoo’s incredible exhibits and take part in engaging group activities designed to bring families closer and strengthen the PWS community.

Admission is $10 for adults, $5 for kids ages 4-12, and children 3 and younger are free.

Learn more about this event and purchase tickets at https://pwsflorida.org/event/family-zoo-day-miami/

01/10/2026

Our first Spotlight on PWS was submitted by María G. Padron in honor of her daughter Ashley (9, living with PWS).

"Soy mamá hispana de una niña 9 años. Desde que nació me la diagnosticaron con PWS. Yo como madre está rota sin saber nada al respecto. Hoy puedo decir siempre hay algo que podamos hacer por ellos. Ella es mi luz y la niña más dulce del mundo. Busca ayuda si estás en esta situación."

Translation: "I am a Hispanic mom of a 9-year-old girl. From the moment she was born, she was diagnosed with PWS. As a mother, I felt broken, not knowing anything about it. Today I can say there is always something we can do for them. She is my light and the sweetest girl in the world. Seek help if you are in this situation."

Submit your own Spotlight on PWS at https://www.pwsausa.org/get-involved/share-your-story/

01/09/2026

We’re thrilled to announce the resurgence of our Rare Aware Art Share campaign in 2026! This year’s theme is in honor of our upcoming D.C. Fly-In. We are asking individuals with Prader-Willi syndrome to make artwork on the theme of Advocacy and Awareness using the prompts:

How do you advocate for yourself?
How do you bring awareness to your community about PWS?

This art share is open to any and all individuals with PWS. There are no restrictions on age, skill level, or where they are in the world. We welcome all art (as long as it can be sent to us digitally)!

To learn more about the Rare Aware Art Share and how to submit art, visit https://www.pwsausa.org/rare-aware-art-share-back-for-2026-pws-advocacy-and-awareness/

01/08/2026

January is Mental Wellness Month. While we know that mental wellness matters every month, this is a great opportunity to discuss and recognize the many ways we can support our mental health.

"The American Psychology Association recognizes that exercise can decrease the effects of stress on the body, improve a person’s mental health and mood, and even enhance the brain’s ability for memory and cognition. The right kind of stress, like exercise, may help make the body more resilient by allowing it to practice coping with stress and building stronger and necessary communication pathways between the body’s physiological systems."

To learn more about how physical activity benefits your mental wellness, read this blog at https://www.pwsausa.org/exercise-movement-and-mental-health/

01/08/2026

January is Mental Wellness Month and we're asking members of our Adults with PWS Advisory Board how they support their mental wellness. Check out our social media every Monday in January for their tips.

We are including a prompt with these tips to help continue the conversation with your loved one with PWS. If you're both willing, please share their response in the comments below to help others find ideas on how they can support their own mental wellness. We will be compiling responses into a blog to keep on our website for families interested in learning more ways to support their own mental wellness.

01/07/2026

We just want to give a huge thank you to our community for supporting this podcast from PWSA | USA! It's been a wonderful adventure and we're so happy to see that you all are listening!

To help us celebrate this incredible milestone (10,000 downloads!), please leave us a rating and a review on Apple podcasts or your podcast platform of choice. If you haven't already, please follow us to stay up to date on the latest episodes. And remember, sharing is caring, so please share this podcast with your friends and family. Help spread awareness on the latest in the PWS community!

https://podcasts.apple.com/us/podcast/pws-united/id1764590734

https://pwsunited.podbean.com/