by PURA Syndrome Foundation | Jun 29, 2025 | Annual Conference, News, Newsletter
What an unforgettable gathering! Our 2025 PURA Syndrome Conference in Dallas, Texas, USA, brought together a record-breaking 171 in-person participants, including 36 PURA Perfect individuals, along with 82 virtual attendees from around the world. For three incredible...
by PURA Syndrome Foundation | Jun 24, 2025 | News, Newsletter
We are so excited to welcome Celena Lozano and Kris Magill to our Board in 2025! Kris has filled the vacant role of Secretary of the Board of Directors. Celena Lozano Celena is a 4th year Neuroscience PhD candidate at the University of California, Davis. She received...
by PURA Syndrome Foundation | Jun 21, 2025 | News
We are pleased to announce the release of our 2024 Annual Report! We are grateful for each of you who continue to support us in furthering our mission to drive research, raise awareness in the general community, as well as connect, educate, serve and empower families...
by PURA Syndrome Foundation | Jun 20, 2025 | Annual Conference
IN-PERSON ATTENDEES We look forward to seeing you next week in Dallas for the 2025 PURA Syndrome Conference, June 27-29! This is an exciting time for us to be together to learn, network and be part of the PURA Syndrome Community. We wanted to provide a few additional...
by PURA Syndrome Foundation | May 28, 2025 | Research
Attention PURA Parents and Caregivers! Do you have an MRI scan of your PURA perfect individual that you are willing to share for research purposes? Dr. Jeff Waugh, a pediatric neurologist and neuroscientist at UT Southwestern in Texas, USA, is conducting a Volumetrics...
by PURA Syndrome Foundation | May 10, 2025 | Annual Conference
Save the dates! We are excited to announce that our 2026 PURA Syndrome Conference will take place June 26-28, 2026 in Munich, Germany . More info to come after our 2025 Conference this June in Dallas, TX, USA. We want to offer a special thank you to Tina & Dierk...
by PURA Syndrome Foundation | Apr 29, 2025 | Advocacy, News
U.S. Families and Friends of PURA, please take a moment to ask your elected officials to support and cosponsor the National Plan for Epilepsy! If your elected official is already a sponsor, you will be able to send them a thank-you message instead. Use VoterVoice to...
by PURA Syndrome Foundation | Mar 20, 2025 | News, Together for PURA 2024-25
Remember that amazing PURA family that generously offered to match donations up to $100,000 by Rare Disease Day? Well, they were so inspired by everyone’s generosity in getting us to $100,000 that they pledged AN ADDITIONAL $25,000 in matching donations! This...
by PURA Syndrome Foundation | Mar 17, 2025 | News, Together for PURA 2024-25
We have a PURA family connection to American professional basketball player Caitlin Clark’s family, and they generously donated the following signed sports items for us to auction off to benefit our Together for PURA fundraiser: Iowa Hawkeye long-sleeved t-shirt...
by PURA Syndrome Foundation | Mar 7, 2025 | Annual Conference
Hear from the Manning family who attended last year’s PURA Syndrome Conference and why it was such a meaningful experience for them! Save the date for the 2025 PURA Syndrome Conference! June 27-29, 2025 in Dallas, TX Register at puraconference.org #PURASyndrome...
