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It's the everyday in life...

September 18, 2018

I have several things to share today with all of you.  And as is often the case, I'm very proud to do so.

 

1) For the keen of eye, you will notice that there are subtle changes to the "Foundation" page of the PURAsyndrome.org. 
 

As a long overdue notice, I have, tonight, posted our annual report, concluding our work and business in 2017.  
 

I knew that this report is important to the our work, not just to document what we have done, but rather, to hold ourselves accountable.  I believe in "sunlight" as it is a natural and wonderful cleanser; light and transparency keeps us honest. 

 

I must confess that the timing of this post is due to my delay and am personally embarrassed that it took so long!  More about my delay later....My point here is that I am human, and sometimes I let the everyday in life get in my way of this job.

 

2) I hope you will continue to review the Foundation Page and you may notice that we have also posted a few other things:

 

      a)  Our 990 is the tax filing, due annually, and

      b)  Our 1023 is the official, legal form describing the intentions of how we are to operate as a non-profit.  

 

Both of these documents are to be publicly available upon request, but we think that we have a higher responsibility than that: they need to be openly convenient for inspection.  So, here they are.  Open for you to review at any time.  
I hope these will help give you confidence that we are working to to best ends and in the best way.

 

I feel very strongly that these three documents are easily accessibly to you.

 

Why?  Because we, as PURA parents and family, have better things to worry about than to wonder about the rules of the Foundation:

 

     Are they doing what they said they would? 

     What are they doing with the money we helped raise? 

What did they say they supposed to be doing?

 

Of course, we want to answer as many of your questions as we can, and this is my way of anticipating some of them.  So if you have more: Be sure to speak up and ask.  We need to ultimately be held responsible to you our PURA Family.

 

'OK Dom, now why the delay with the annual report?'

 

It was my intention that this report be compiled, approved, and published prior to the end of April.  And while I had it MOSTLY completed in March, there were a few last edits that our board requested upon review.   That lead into a timeline overlapping with the annual conference, and then, upon my return from the UK, I moved my family 250 miles to Kansas City.  While these things are very exciting, they are not at all conducive to publishing an annual report.

 
I hope my life events do not sound like excuses: I don't intend them to be, but rather an explanation as to my delay.  The responsibility is mine alone.  And it is the everyday that has delayed my best intentions.  I hope that you can understand. 

 

It is in the everyday of lives that make life rich: our regular morning routine of coffee, making dinner on a Monday night, perhaps a movie custom on a Friday night, and all of the other, everyday, ordinary things in life that we remember that need to be celebrated and participated in.  These are the 'regular' life things we want all of our family to grow up with and to remember.  I hope that we can, as often as we can, do those everyday things. 

 

They are really wonderful things!

D

Dominic J. Spadafore,

President,

PURA Syndrome Foundation

 

 

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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 .