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...
by Eva Tucker | Sep 17, 2018 | News
I have several things to share today with all of you. And as is often the case, I’m very proud to do so. 1) For the keen of eye, you will notice that there are subtle changes to the “Foundation” page of the PURAsyndrome.org. As a long overdue...
