Board Member Celena Lozano wins Award for NASW piece

by Liz Astridge | Nov 7, 2025 | News

We are thrilled to celebrate our very own Celena Lozano – PURA mom, board member, and neuroscience PhD student – for winning a Summer Writing Award through the National Association of Science Writers (NASW) 2025 Perlman Virtual Mentoring Program! In her...

Fall 2025 Reminders

by PURA Syndrome Foundation | Oct 22, 2025 | News, Newsletter

Connecting Families with PURA-Experienced Clinicians One of the most common questions we hear from new families is: “How can we find doctors who are familiar with PURA Syndrome?” To help answer that, we’ve been building a Clinician Directory — a growing list of...

COMBINEDBrain Annual Summit

by Celena Lozano | Oct 22, 2025 | Networking/Outreach, News, Newsletter

Last month, our board member Celena Lozano had the opportunity to attend the COMBINEDBrain Annual Summit. This gathering included patient advocacy groups (like the PSF), researchers, and industry partners all working toward the common goal of fast-tracking treatments...

$11,000 for 11 Years

by PURA Syndrome Foundation | Oct 15, 2025 | Fundraising, News, Newsletter

PURA $11,000 for 11 years: This year, we’re celebrating over a decade of strength, resilience, and community—and we’re setting a BIG goal in a short time: $11,000 by October 31st! Together, as families, friends, and supporters across the world, we can fuel research,...
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