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A Global Community is:

April 3, 2018

The PURA Syndrome Foundation strives to be a global organization that fulfils our mission of supporting a global community.  So, what does that mean?

 

I have been thinking a lot about this of late. 

What does it mean to be a Global Community?

What does it mean to be "Global"?  And why is "Global" important?

 

"Global" is important because we are, as of the middle of March, 208 families (and growing), across the world. While I have previously spoken about how our numbers are increasing, 208 families is still rare; so in order to be strong, we need to be united.  Global is also important because with all things unknown, it is important to have as broad of a perspective as possible to solve that unknown.  A Global perspective, if you will.

 

Being rare does not mean being alone

 

What does it mean to be "Global"?  It means everyone. 

It means more than those who speak any particular language.  It means more than those on Twitter, on YouTube, and more than those with an internet connection. It means more than just our children with PURA syndrome; It means all of us: our families, our medical teams, our friends, near and far.  
To me, it means as many people as we can.

 

So back to my central question: What is a Global Community? 

In terms of the PURA Syndrome Foundation, being a Global Community means to serve all of us.  To have all of us participate, sharing our voices together.  It means to be enriched from our broad perspectives, our broad variety of languages, and the rich depths of our experiences.
It means working together.  

 

Being a Global Community is important because none of us should feel alone

 

I've been pondering this because I think there is more we can do to come together as a global community.  
So I'm asking for your help, please.  

 

We, the Foundation, are taking on several things this year to broaden our reach out to the global community:

  • We are advertising for a Vice President to the board who speaks several languages, and is located outside the USA.  

  • We are looking for someone to join the board who is from the UK, our second largest concentration of PURA families.  And another from central Europe (the more the better!)

  • We also are looking to hire translators for our introduction sheets, education material, the website, blogs, and other important information for our families and their medical teams.

  • We are also engaging a firm to help identify professionals unconnected to PURA syndrome to join the board, who have experience in business and non-profits from across cultures. 


Please make your voice heard, your concerns expressed, and tell us how we can help you.  
I assure you, you are not alone.

 

D

Dominic J. Spadafore, AIA

President

PURA Syndrome Foundation

d.spadafore@pura-syndrome.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 .