by Dominic Spadafore | Apr 18, 2020 | Research
Dear PURA community: I hope you are all healthy and this finds you well. I am sure that we are all standing resilient and vigilantly keeping our health and our loved ones safe in these uncertain and scary times.n nRecently we’ve been getting some questions about...
by Dominic Spadafore | Mar 7, 2020 | Annual Conference
nIt is our sad duty to inform you, our families and our community, that we as a board have taken the unfortunate decision to suspend this years in-person PURA syndrome conference.n nThis decision has been very difficult. And it has been discussed extensively. We are...
by Dominic Spadafore | Dec 27, 2019 | News
nAs it is the end of the year, I find myself going over a number if lists. n nLists of what I did this past year. A list of Thank You cards for presents. A list of places our family wants to go next year.n nAnd ultimately, a list of things that I need to finish....
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...
