by PURA Syndrome Foundation | Oct 27, 2020 | News
The PURA Syndrome Foundation is pleased to announce the appointment of Amanda Shanks as President of the Board of Directors for a term of three years. Dominic Spadafore, who faithfully served as board president for the last four years, will remain on the Board of...
by Dominic Spadafore | Oct 24, 2020 | News
nnExciting News!I’m glad to be able to announce to you some exciting news at the Foundation!n nThe PURA Community has grown and changed since the start of the Foundation in 2015. Through our internal strategic planning we have realized that we need to change to...
by Dominic Spadafore | May 29, 2020 | Uncategorized
I woke up with morning and reviewed the litany of appointment reminders that have become common place with our modern technology and a “smart phone”. One in particular struck me this morning and it made me think of all of us. We the global PURA...
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...
