by Dominic Spadafore | Jun 2, 2019 | Annual Conference
nIn Case you missed it: Here is the 2019 Boston Conference agenda. n n n,Check it our here!n nYou will also be interested to know that the ,conference registration has been extended to the end of this week, Wednesday, June 5, so it’s not too late to join us in...
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...
by Eva Tucker | Jun 8, 2018 | News
Clinical research fellow position at University of Southampton to establish and administer the Global Patient Registry, undertake research into the Natural History of PURA syndrome and publish future papers. June 2018 – The PURA Syndrome Foundation previously...
by Eva Tucker | Feb 27, 2018 | News
Not long ago the 200th case of PURA syndrome was diagnosed globally. This is momentous news for all of us! And I welcome this news as great progress in helping to support our ‘Rare Family’. It increases our ability to support research programs and our...
by Eva Tucker | Dec 18, 2017 | News
I’ve had more than my fair share of happy news to announce lately, and this is just the next happy moment! In November we secured an anonymous donation for $3,000 with the challenge of raising our donor base and awareness: 300 new donors within 30 days. in...
by Eva Tucker | Jun 20, 2017 | News
Hi! My name is Karen Bennett and I am the USA Parent Liaison. I am a single Mom of two boys, 26 and 14 years old. My youngest son, William, was diagnosed with PURA in 2015. I sometimes get asked what it’s like to be a single Mom of a medically complex child....
