This past weekend the PURA Syndrome Foundation Board of Directors conducted its November meeting. The meeting lasted around 2 hours, slightly longer than usual. We reviewed the treasurer’s report, reviewed several proposals and talked about business issues of the board. Pretty boring stuff, from the sound of it. But it was not really boring at all!
I am proud to announce that the PURA Syndrome Foundation has awarded its first research grant. This directly fulfils a part of our mission and honours friends and family who have given of their time and donated funds to help the Foundation.
Our first research grant will help fund an 18-month MD position at the University of Southampton, UK. This role is jointly funded by the Foundation and by an anonymous donor to the University of Southampton, UK. The MD in this role will develop and administer a secure global online patient registry. Information from this registry will form the basis of future research papers and help us to better understand what happens with PURA syndrome across the life span of patients (longitudinal study).
In early 2018 there will be more information about the registry and how you can help: we will be asking PURA families to contribute, along with their clinical medical teams.
We also approved posting of a Vice President position. We will have the position description available soon, and I encourage you, if you are interested, to please consider contacting me about it. You don't have to be a PURA family member to apply. Just willing and able to help!
It’s been a very exciting few weeks here in #PURAland
Announcing our 2018 conference location and opening event registration.
Celebrating PURA syndrome’s 3rd birthday.
Publication of a joint research paper by the Foundation and the Global Research Network (GRN).
Our new PURA holiday store.
Granting a research position this week.
Posting a new VP board position next week.
In the upcoming month, we will be making several other exciting announcements as well, so please keep coming back here for updates!
I hope you are as excited as I am about our recent progress. I feel that we are acting on our mission in real and concrete ways. We are making real progress. And that progress is in large part due to our amazing global PURA community;
All of you who are reading this.
All of you who have helped raised or donated funds.
All of you who are trying to help your own #PURAperfect child!
My sincerest THANK YOU
Dominic J. Spadafore
President, PURA Syndrome Foundation.