TREND Community

06/17/2026

⏰ 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

06/15/2026

TREND Community is excited to be at in Baltimore!

Today, we presented our poster, Using Social Listening to Understand the Sleep Lexicon in Online PWS Communities, highlighting how patient and caregiver conversations can help deepen our understanding of sleep-related experiences in the Prader-Willi syndrome community.

A special thank you to Dr. Aaron Chidekel from Nemours
and the team at Harmony Biosciences for their support of this important work and commitment to amplifying patient voice in sleep research.

06/15/2026

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

06/10/2026

We're excited to share that TREND Community will be presenting three posters at hashtag in Baltimore!

Our presentations highlight patient voice and real-world insights across sleep communities, including:
Using Social Listening to Understand the Sleep Lexicon in Online PWS Communities
📅 June 15 | 10:00–10:45 AM
Oxybate Treatment Experience and Preferences of People With Idiopathic Hypersomnia
📅 June 16 | 10:00–10:45 AM
Deriving Lexicon from Community Word Usage: A Social Listening Analysis of “Brain Fog” in Central Disorders of Hypersomnolence
📅 June 17 | 11:00–11:45 AM

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.

06/08/2026

Many families living with PWS have questions about sleep, and cataplexy is often one of the most misunderstood symptoms.
Join us for Shedding Light on PWS and Sleep: Understanding Cataplexy, a conversation featuring caregivers, lived experience perspectives, and clinical experts. Together, we'll explore how to recognize cataplexy, better understand its connection to sleep disorders in PWS, and share real-world experiences and practical tips.

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

Whether you're newly learning about cataplexy or looking to connect with others who understand the journey, we hope you'll join us.
RSVP here: https://www.eventcreate.com/e/cataplexy-pws-webinar

06/03/2026

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

06/03/2026

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.

05/28/2026

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]

05/20/2026

We’re happy to help share this upcoming event from Folia Health focused on navigating uncertainty and emotional regulation in Prader-Willi Syndrome (PWS). Join Dr. Al Freedman for a conversation around practical tools and support for caregivers and families.

🗓 May 21, 2026 | 12–1 PM EST
Be sure to check it out and register!

Join us for an honest (and free) conversation about uncertainty in rare disease, and practical ways to feel more grounded with psychologist and rare disease advocate, Dr. Albert Freedman. 🤍

What to expect:
🧰 Practical tools for "what if" thinking and anxiety about the unknown
🤍 Permission to feel overwhelmed and how to work through it
🧭 Strategies for navigating transitions and the unexpected

Ready to register?
When: May 21 at 12pm EST
Sign up: https://shorturl.at/bp4mk

05/15/2026

Today is PWS Awareness Day 🧡 This community is close to our hearts. PWS is deeply connected to the foundation of TREND Community, and that personal connection continues to guide the work we do every day. Today, we recognize the strength, resilience, and connection within the Prader-Willi syndrome community. We’re honored to listen, learn, and help amplify the voices of patients and caregivers and bring greater awareness to their lived experiences.

To learn more about TREND and our work in PWS please visit our website: https://rebrand.ly/14bg4f6