TREND Community

⏰ Happening today! Join us from 2:00–3:30 PM ET for Shedding Light on PWS and Sleep: Understanding Cataplexy. We'll hear from individuals with lived experience, caregivers, and clinical experts as we discuss recognizing and understanding cataplexy in Prader-Willi syndrome.

There's still time to register and join us—we hope to see you there!

Cataplexy is something many individuals with Prader-Willi syndrome experience, but it isn't always recognized or understood right away. Families often find themselves trying to make sense of symptoms, searching for answers, and learning as they go.

Join us for Shedding Light on PWS and Sleep: Understanding Cataplexy, a conversation that brings together people living with PWS, caregivers, and a sleep specialist to share experiences and insights about cataplexy.

Hear firsthand from individuals living with PWS and cataplexy, learn about the challenges families have faced along the way, and gain a better understanding of how cataplexy can affect daily life.
This isn't a formal lecture—it's an opportunity to listen, learn, ask questions, and connect with others who understand.

Speakers:
Dr. Aaron Chidekel, Nemours Children's Hospital
Maria Picone, TREND Community
Justice Rickenbach, Living with PWS and Cataplexy
Charlotte Tan, Living with PWS and Cataplexy

🗓️ June 17, 2026
⏰ 2:00–3:30pm ET/1:00-2:30pm CT/12n-1:30pm MT/11:00am-12:30 PT
RSVP here: https://www.eventcreate.com/e/cataplexy-pws-webinar

TREND Community is heading to two upcoming conferences this June!

📍 World Orphan Drugs CongressOrphan Drug Congress | Boston, MA | June 9–11
We're looking forward to connecting with patient advocates, industry partners, researchers, and others across the rare disease community.

📍SLEEP 2026 | Baltimore, MD | June 14–17
We're excited to share that we'll be presenting three posters at this year's meeting, continuing to bring forward patient voices and real-world insights in sleep research.

Will you be there? Let’s connect! Visit our website at https://rebrand.ly/14bg4f6 and fill out the contact form under the Resources section at the bottom of the page.

Sleep issues in Prader-Willi syndrome are often misunderstood and overlooked. Thank you to the PWS community for continuing to raise awareness around Excessive Daytime Sleepiness (EDS) and the real impact it can have on daily life. 🧡
If you're interested in learning more about the TEMPO study or want guidance before getting started, please reach out — we're here to help:
📩 Message PWAofPA directly through Messenger
📧 Email Jess at [email protected]
👩‍💼 Or contact Maria at [email protected]