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...
by Eva Tucker | Apr 15, 2019 | News
As you may already know, we have had some recent turn over on our board. Unfortunately we have recently had to say “Thank you” for your service to both Mel Anderson and Ceciel van Hoeckel. Mel has been serving as our Medical and Research liaison since we...
by Eva Tucker | Apr 8, 2019 | News
Happy New Year to everyone! A great big THANK YOU to Joanna Horsnail for her time on the Board!!! As the close of 2018 came upon us, out board member is rotating on schedule. And as part of that, I’m very sorry to see Joanna rotate off from our organization....
by Eva Tucker | Apr 8, 2019 | News
I am excited to introduce and give a big Welcome to Amanda Shanks, who joined the PURA Syndrome Board of Directors at the first of the year as our Fundraising Director. Amanda has been active with the Foundation over most of the last year working with Joanna...
by Eva Tucker | Apr 8, 2019 | News
We are thrilled that over 60 families will be participating in the PURA Syndrome EEG Research Study – so far! Just a reminder that enrollment for this study will conclude on Friday, April 19th, 2019 and it is not too late to enroll. The research study being...
