Prader-Willi Syndrome of Nebraska

06/08/2026

When cataplexy occurs in individuals living with Prader-Willi syndrome (PWS), it can be confusing, concerning, and difficult to recognize.

Join us for Shedding Light on PWS and Sleep: Understanding Cataplexy, a conversation bringing together caregivers, individuals with lived experience, and clinicians to explore the realities of cataplexy in PWS. We'll discuss how symptoms may present, the relationship between cataplexy and sleep disorders, and what families have learned along the way.

🗓️ Wednesday, June 17, 2026
⏰ 2:00–3:30pm ET/1:00-2:30pm CT/12n-1:30pm MT/11:00am-12:30 PT

More than a webinar, this is an opportunity to learn from both experts and the community, ask questions, and connect with others navigating similar experiences.

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

06/08/2026

"Our 2nd Annual United in Action Brunch, Hummus & Watermelon, was a tremendous success! We were blessed to have approximately 50 attendees, including five PWS families, join us. Many shared their powerful stories and reminded us all why we do this work. Through the generosity of our guests, we are overjoyed to announce that we raised close to $4,000 of our original $5,000 goal! We also had a wonderful side auction, where we were able to raise an additional $1,200 benefiting our overseas efforts in Egypt and the Middle East. The outpouring of support and the stories shared in that room moved every heart present. What made me most proud and overjoyed was the impact we were able to make on so many people. They learned something new about Khaled and about PWS that they did not know before. They also heard from other parents who are living the journey, which was something everyone said they appreciated and will never forget! We are so grateful for this community. We want to thank everyone who showed up, the volunteers who helped and the generous donors who donated towards the event and the auction!" - Hummus & Watermelon Host Sarah Kasaby (mom to Khaled, living with PWS)

There's still time to donate to Hummus & Watermelon! Every dollar helps ensure PWS families have the support, advocacy, and resources they need to thrive: https://give.pwsausa.org/event/hummus-and-watermelon-united-we-brunch-for-pws/e790625

06/01/2026

It is always amazing to hear from people who are living this PWS battle all along and hear their perspectives and experiences.

Thank you Jason and Aaron for sharing and participating! It is thanks people like you that we keep going and keep doing what we are doing!

And for us newer parents to the journey, you guys are the inspiration and hearing you speak and share your experiences and advices means everything to us and gives us hope beyond words!

Thank you for attending Prader-Willi Syndrome Association USA Second United in Action Brunch Hummus & Watermelon!

We love you!

05/31/2026

Thank you everyone who showed up and today and showed support!

Your presence, your generosity, and your energy filled the room with something truly special.

A special thank you to our generous sponsors!
African Immigrant Family Services -AIFS
Neurocrine Biosciences
Chaima African Cuisine
Mediterranean & European Grocery

🧡

05/31/2026

05/25/2026

🇺🇸 On this Memorial Day we remember and honor and thank each and every service member who gave everything.

Your sacrifice is not forgotten. 🌹

🌹 Happy Memorial Day. Honor them. 🇺🇸

05/21/2026

Happening THIS WEEKEND!

Have you heard of CONNECTION CIRCLE?
We Are Brave Together’s Connection Circle happening here in Omaha!

Come join our space where moms of special children find sisterhood, compassion, and the support they never knew they needed. 💛

DATE: Saturday, May 23, 2026
TIME: 1:00 - 2:30 PM Central Time
LOCATION: Bennington, NE
LEADERS: Paige Rivard & Kelsey Lahaie

Want to join us? Sign up here for free!

https://www.wearebravetogether.org/gatherings/p/omaha-nebraska-connection-circle-52326-in-person

05/15/2026

Today, May 15th is Prader-Willi Syndrome Awareness Day! 🧡🎗️🎗️

We want to take a moment to recognize and celebrate Prader-Willi Syndrome (PWS) Awareness Day on May 15th

This day is not just important locally — it is recognized and celebrated globally as a day to shine and go orange for this rare and complex genetic disorder that affects many individuals and families around the world.💙🧡🎗️🎗️

We want to thank governor Jim Pillen for recognizing and proclaiming today May 15, 2026 in the State of Nebraska and urging all citizens to learn about it!

PWS affects so many areas of a person’s life including hunger regulation, development, behavior, and learning — and yet so many people have never heard of it. That is exactly why days like today matter so much. 🧡

Whether you know someone personally affected by PWS or you are learning about it for the first time — you can make a difference simply by sharing this post.


Prader-Willi Syndrome Association USA
International Prader-Willi Syndrome Organisation (IPWSO)