Recent Blog Posts
Please reload

Blog Archive
Please reload

Search By Tags
Please reload

How to reach the President?

November 25, 2018

 

One of the Joys of modern technology is that it can find you.  But it doesn't always work...

 

Dear PURA friends and family:

 

Earlier this year I was observing occasional minor delays in e-mails.  I assumed (wrongly as it turned out) that it was from an issue with the computers at my work office and the format of our e-mail service.
Since changing employers, moving cities, and establishing new home services, these e-mail troubles have gotten much worse.  And the news is starting to filter back to me that there is a real issue with getting a hold of me.  I think some have even started to call me names!

 

Let me apologize for these delays.  I am sure that there are some lost e-mails, and I have recently been told of messages that have gone unreturned. 

 

Let me also assure you that any delay in correspondence is not malicious or otherwise meaning to avoid or cause issues: It is not on purpose.

 

I have engaged help from several sources to look at my computer settings, e-mail settings, phone settings, program compatibility, operating system conflicts, etc etc.  So far, I've reinstalled several operating systems, reset default settings, and am opening up junk folders galore!  If these problems look to continue, we will establish a new e-mail address for me.  It is important for you to be able to reach the president of the foundation.

 

So I wanted you to know that I know there are increasing issues and we are working to solve them.

 

In the mean time, I wanted to share with you other ways to reach me:

Please continue to send all PURA Syndrome Foundation related e-mails to: d.spadafore@pura-syndrome.org

Please ALSO cc my personal address: gumbada@hotmail.com

I can be reached via text at: 918.743.4007 (US country code +1)

I'm having issues with my Whatsapp account, but that may be fixed soon: Dominic Spadafore

 

I am not, at this time, using facebook messenger.  

 

While we are working on this issue with my accounts, I encourage you to try multiple ways of getting in touch with me.  Or others, especially concerning important issues.  Because I am sure that I'm not the only person in the history of the internet to have e-mails gone lost, the more important an issue is to me, the more ways I try.

 

Thank you all for your patience, and we'll get this fixed soon.

 

Cheers!

 

D

 

Dominic J. Spadafore, AIA

President

PURA Syndrome Foundation

Please reload

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 .