by Dominic Spadafore | Dec 16, 2019 | News
On behalf of the PURA Syndrome Foundation I would like to express our heartfelt ,Thank You to Kerry Hildring for her service to the Foundation. n nSince joining the board in January 2018, Kerry has diligently and passionately served both the Foundation and you, our...
by Dominic Spadafore | Nov 25, 2019 | Research
Dear PURA Families:n n nWe are very proud to be launching the ,,PURA syndrome Global Patient Registry! This registry has been in the works for a couple of years, and is meant to be a repository of patient information that can be used for future studies. It is only...
by Dominic Spadafore | Nov 25, 2019 | Research
I thought I’d remind everyone, in case you missed it, the PURA Global Registry is now started!n nThis is a very exciting time for all of us, and I wanted to drop a quick note to clarify how you, as a parent, can interact with the registry.n nFirst, from our...
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 | Jul 2, 2019 | Annual Conference
n Dear PURA Family:nnnIt was a wonderful time seeing you in Boston and I’m so glad that you were able to make it there.n nIn all, 102 people attended, representing 6 countries!n nWe got a lot of research updates and had some great conversations about ourselves:...
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 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...
