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  • Dominic J. Spadafore

Just another Thursday?

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 Family.


Today was one month ahead of what was to be the start of our PURA Conference.

I was stuck by the depth of loss I felt from this reminder; suddenly a concrete alarm that made it clear I would not be seeing you this year. It was a poignant moment in the darkness, looking at the optimistic screen of the ever present phone. Suddenly my mind went full circle around my personal experiences and then around our collective ones.


First, obviously, I was missing you, our PURA family and our soon to be missed gathering in the UK. I find a great renewal of spirit to see and meet and interact with our global family, so recently strangers and after an important foundation to each other.

My second thought was to be thankful for the opportunity to be quarantined with my immediate family: for it is in this solitude that we've been protected from a silent and vicious infection that holds the potential of untold suffering.


I hope that I am not alone in missing our in-person conference because we get to meet each other and know that we are not alone. There is no amount of technology or virtual meetings that can replace seeing the light shine across the face of a new friend. PURA syndrome was defined less than 6 years ago. We've been meeting as a group of families for 4 years. And missing it just this once is to me missing my brother or sister or close friend from long ago.


As the PURA foundation is looking forward we are working to keep up some of the conference with technology. We are currently working with the expected presenters to provide videos for us to present to you. The foundation will be presenting a "State of the Foundation", and we're brain-storming as to how to take questions in some shape and form. Our goal is to start releasing videos on a monthly basis this season and already have commitments from several members of the research community.


Due to the COVID-19 pandemic that has affected us all, not only have we had to cancel and restructure the annual conference this year but our work has slowed on the projects we've been striving for: the Global Registry, starting of a BioBank, and exploring a clinical peer-to-peer network among others. While the board continues to meet regularly we are constantly concerned with the accomplishments and progress on these fundamental projects.

As we meet we are starting to plan for the 2021 conference as well as new events. We are making progress on how the foundation is run and our refining our priorities to be more responsive to you and our mission, including new grant applications and supporting further research. And how to get more of you involved with the work of the foundation. Will will have more updates for you as soon as we have firm plans to share.


I know I've been "rambling" here and that's somewhat unlike me, so I'll conclude with this: In these times of global pandemic, economic uncertainly, and untold stress we are all experiencing I want you to know that we are still here. Trying as we can to help you know that you are not alone. None of us are. Together we are #PURAperfect. And together we will see each other again!


D


Dominic J. Spadafore, AIA

President

PURA Syndrome Foundation

d.spadafore@pura-sundrome.org

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The PURA Syndrome Foundation is a registered 501(c)(3) charity organization. Information on this website is not a substitute for personal medical advice. Families should consult a medically qualified physician in all matters relating to genetic diagnosis , management, and health . Information about PURA and genetics in general is a very fast moving area and while the information on this website is regarded as the best at the time of publication , some facts may change later .