Prader-Willi Syndrome Association USA

Prader-Willi Syndrome Association USA We hope you will suggest the PWSA | USA page to your friends! Website: www.pwsausa.org It is the most common genetic cause of obesity.

Prader-Willi syndrome is a non-hereditary birth defect resulting from a disorder of chromosome 15. It is a serious, life-long, and life threatening medical condition occurring in 1:12,000-1:15,000 live births in both genders and all races. It is characterized by hypotonia (low muscle tone), hyperphagia (uncontrollable hunger), cognitive impairments, and difficult behaviors.

Join PWSA staff members for a live zoom to learn more about how you can promote PWS Awareness month this May! We'll talk...
04/22/2026

Join PWSA staff members for a live zoom to learn more about how you can promote PWS Awareness month this May! We'll talk about the importance of spreading awareness, how to share your story, create a fundraiser, advocate with your representative, or simply share the graphics that PWSA creates. We'd also love to hear your creative ways for celebrating and spreading awareness. There will be time for your questions during the zoom. If you can't make the meeting at the scheduled time and would like your question answered, please email africke@pwsausa.org with the subject line, "PWS Awareness Month Community Conversation." A recording of this meeting will be made available to the public.

Register in advance for this meeting:
https://us02web.zoom.us/meeting/register/rTMKT_4-RRy-Yj2trAw7EQ

After registering, you will receive a confirmation email containing information about joining the meeting.

Check out the latest in PWSA | USA events and PWS news in research, family support, and advocacy 🎙️💜Listen to PWS United...
04/21/2026

Check out the latest in PWSA | USA events and PWS news in research, family support, and advocacy 🎙️💜
Listen to PWS United on your favorite podcast app or at pwsunited.podbean.com.

04/21/2026

In conversations about equity, to move forward and face the inequities with dismantling tools and solutions, it is important to recognize where the inequities originated. In a recent PWS United podcast episode, with some founding members of the PWSA | USA Equity Committee, we discuss the meaning of equity, the occurrences and challenges of health equity, and how this organization can move forward in a way that recognizes and supports all people with PWS.
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Listen to “Ep84: Welcoming PWSA | USA’s Equity Committee” on your favorite podcast app or at pwsunited.podbean.com.
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As we head into National Volunteer Week, we’d like to take a moment to acknowledge the many wonderful volunteers that he...
04/20/2026

As we head into National Volunteer Week, we’d like to take a moment to acknowledge the many wonderful volunteers that help the PWS community through PWSA | USA. Our volunteers help us continue striving to meet the needs of families across the country and beyond. Many parents, grandparents, siblings, and other caregivers find that volunteering in the PWS community helps them move easier through the challenges this syndrome can bring, as well as finding a supportive community. Together, we strengthen and uplift our community and our loved ones with PWS. Learn more about how you can join PWSA | USA as a volunteer at https://www.pwsausa.org/volunteers-of-pwsa-usa/

Emotional regulation is the ability to manage one's emotions in a healthy, appropriate manner. This may be especially ch...
04/20/2026

Emotional regulation is the ability to manage one's emotions in a healthy, appropriate manner. This may be especially challenging for your loved one with Prader-Willi syndrome, leading to meltdowns, tantrums, and behavior issues. When applied with relevant discussion and practice outside of triggered moments, simple tools like an emotion thermometer can help a person learn more about themselves and their emotions. By learning to recognize what different emotions feel like and how they are triggered or calmed, our loved ones can gain better skills to manage their emotions in challenging moments.

To learn more about one resource for emotional regulation, please visit https://zonesofregulation.com/

Colorado PWS community: Celebrate by attending Magnolias & Mimosas, A Spring Brunch Fundraiser hosted by Kat Lucero (m...
04/19/2026

Colorado PWS community: Celebrate by attending Magnolias & Mimosas, A Spring Brunch Fundraiser hosted by Kat Lucero (mom to Ronan, living with PWS).

📅 Saturday, May 16, 2026 | 11:30 AM
📍 The Shoppe (119 Costilla St., Colorado Springs, CO 80903)
🔗 https://give.pwsausa.org/event/magnolias-and-mimosas/e786405

Each May, Magnolias & Mimosas brings together an intimate group of 50 guests in Colorado Springs for an elevated brunch experience rooted in connection, beauty, and purpose. Enjoy mimosas, meaningful mission moments, and an elegant silent auction in a warm atmosphere that raises both awareness and critical funds for PWSA | USA. In its first year, the event raised nearly $3,000 - a testament to the power of community. Help us grow this event and make a difference! We hope to see you there 🥂🌺

04/19/2026

As we head into National Volunteer Week, we wanted to take a moment and let you all know how grateful we are for the volunteers at PWSA | USA! Thank you for helping us with our mission to enhance the quality of life and empower those affected by Prader-Willi syndrome.

Receiving a diagnosis of Prader-Willi syndrome is overwhelming for most families. Many of us have never heard of PWS unt...
04/17/2026

Receiving a diagnosis of Prader-Willi syndrome is overwhelming for most families. Many of us have never heard of PWS until it becomes the compass point by which decisions must then be steered. Receiving an autism diagnosis on top of PWS adds another waypoint to the journey, potentially creating a map of chaotic, disconnected trails families must learn to navigate. In this blog, Dorothea Lantz, mom to Hunter, shares some of her experiences with her son who has been diagnosed with both PWS and ASD. Through her story we can see how to navigate the challenges of a dual diagnosis with compassion, determination, and grace.

Read this blog at https://www.pwsausa.org/living-between-diagnoses-hunters-journey-with-prader-willi-syndrome-and-autism/

is right around the corner, and we want to help you make the most of it! This week's resource spotlight is our PWS Awa...
04/16/2026

is right around the corner, and we want to help you make the most of it! This week's resource spotlight is our PWS Awareness Month hub, your one-stop destination for everything you need to raise awareness with friends, family, and your community. Inside you'll find downloadable graphics, a daily PWS facts toolkit, 15 ways to get involved, information about Prader-Willi syndrome, PWS awareness attire, a proclamation toolkit to bring awareness to your city or state, a place to share your loved one's story, and so much more 💜🩷🩵💚

👉 Explore everything at: https://www.pwsausa.org/pwsawarenessmonth/

One year ago, the FDA approved VYKAT XR, the first-ever treatment for hyperphagia in PWS. But how do families actually a...
04/14/2026

One year ago, the FDA approved VYKAT XR, the first-ever treatment for hyperphagia in PWS. But how do families actually access it?

🎙️In our latest episode of PWS United, PWSA | USA CEO Stacy Ward and Director of Development Melanie Zalman sit down with members of the PANTHERx Rare Pharmacy team to break down exactly how the process works, from rare pharmacy care to navigating insurance appeals, so families feel informed and empowered every step of the way. Listen on https://pwsunited.podbean.com/ or your favorite podcast streaming platform.

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1032 E Brandon Boulevard 4744
Brandon, FL
33511

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