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...
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...
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,...
by PURA Syndrome Foundation | Oct 5, 2025 | Networking/Outreach, News, Newsletter
Chicago Monogenic Epilepsy Summit (CHIMES) In July, Drs. Doug Nordli Jr. and Sam Volchenboum, in partnership with Data for the Common Good (D4CG) at the University of Chicago and the Chan Zuckerberg Initiative, invited the PURA Syndrome Foundation to the inaugural...
by PURA Syndrome Foundation | Oct 5, 2025 | Grandparents, News, Newsletter
At the 2025 PURA Conference, we announced the formation of a new group, GrandPOPS for any grandparent of a child with PURA Syndrome.On September 27, we welcomed a fantastic group of grandparents for the first-ever GrandPOPS Meet-up — held virtually and filled with...
by Liz Astridge and Eva Tucker | Oct 5, 2025 | News, Newsletter
We have had a lot of great things happening over the past few months at the PURA Syndrome Foundation! Our conference in June was once again a wonderful weekend full of love, laughter, a few tears, and most importantly our PURA family. That weekend always helps to...
