by Dominic Spadafore | Jul 5, 2019 | News
I am excited to announce that Kadidia Cooper is joining the PURA Syndrome Foundation Board of Directors!nKadidia is joining us as our Treasure. n nKadidia brings an international perspective to the board, having grew up in East Germany and was a young girl when the...
by Dominic Spadafore | Jun 4, 2019 | News
nI am excited to announce that Todd Vaught has joined the PURA Syndrome Foundation Board of Directors. Todd is bringing his talents as the US Vice President.nTodd has two children, the eldest of who is 25 and has PURA syndrome. Todd brings a number of years experience...
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...
