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If you read our blogs, it’s time to catch you up!
📍 Family Retreat – October 3–5, 2025 – Aurora, CO
Let’s start with some exciting news: our PDE Family Retreat is happening October 3–5, 2025, in beautiful Aurora, Colorado!
One of the highlights this year will be a special tour of the Coughlin Lab at the University of Colorado Anschutz Medical Campus—a rare opportunity for families to meet the scientists pushing the boundaries of PDE research and to see firsthand how the science is progressing.
This retreat is more than an event—it’s a chance to connect, learn, and build community. Whether you’re newly diagnosed or a longtime advocate, we want to meet everyone. Get in touch if you are interested in coming! It’s not too late!
🔍 What We’ve Been Up To – Newsletter Highlights
🧠 1. We are hosting some interesting research!
CurePDE has supported two areas of research- one is a partnership with Unravel for drug repurposing and the second is with the Coughlin Lab to move a novel therapeutic forward.
📺 2. Monthly Webinars + Virtual Events
We’ve continued hosting monthly webinars on the 1st Tuesday of each month, featuring expert insights and family voices.
👉 Missed an event?
All recordings are available on our YouTube channel—be sure to subscribe!
❤️ 3. Family Stories: Strength in Sharing
Your voices make this community stronger. In our “Real People, Real Stories” blog series, families shared their deeply personal journeys:
- Ava, now seizure-free thanks to early diagnosis and Triple Therapy.
- Cleo, whose diagnosis came after a long and winding road through cardiac and feeding concerns.
- Stories from Finley, Ruby, Maverick, Jack, and others highlight the courage and perseverance in every corner of this community.
🔬 Coughlin Lab Tour – Bridging Research and Real Life
As part of the upcoming Family Retreat, we’re thrilled to announce a guided tour of the Coughlin Lab, where researchers are working on zebrafish models, lysine metabolism, and translational therapies for PDE.
This visit offers families an unparalleled window into what research looks like up close, and how your stories and experiences directly inform the science.
This is where hope meets action.
📣 Stay Connected
Whether you’re looking for education, support, or ways to get involved—we’re here for you.
- 📧 Email: anna.sowa@curepde.org
- 🎥 YouTube: Subscribe for monthly webinars & family stories
- 💬 Facebook: Join our community page
- 🗓️ Webinars: First Tuesday of every month—join us live or catch up on YouTube
Let’s keep growing together. Thank you for being part of this vibrant, resilient, and determined community.
