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April 18, 2020

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April 18, 2020

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.

Recently we've been getting some questions about the status of the Registry. 

We wa...

March 7, 2020

It 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.

We know that you will all have questions about this decision. 

And we welcome them, even if we don't have concise ans...

December 27, 2019

As it is the end of the year, I find myself going over a number if lists.  

Lists 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.

And ultimately, a list of things that I need to finish.  "The Late To Do list" if you w...

December 16, 2019

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. 

Since joining the board in January 2018, Kerry has diligently and passionately served both the Foundation and you, our families, as a Parent Liaison.  Kerry...