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 started and had been tireless in her contact with new parents and the research community. Ceciel has been the international parent liaison since the creation of the Foundation. Ceciel's multi-lingual capacities and sensitivi

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 spearheaded by Katrine Johannesen from the Danish Epilepsy Research Hospital in Denmark. Additional information and details about the study can be found on our website: https://www.purasyndrome.org/eeg. If you are already

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 Horsnail learning the "fundraising ropes". Some of you met Amanda when she gave a presentation at the 2018 conference in Cambridge, England. She has also been working to support this years 3rd Annual PURA Perfect Night i

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. She has been invaluable to us and our development in many roles. She first joined the board as a general member, and stepped in as the interim President, and has since been leading the charge as our main point of conta