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The Road to Philadelphia

May 24, 2017

Dear PURA Friends:
 

I'm glad to be making my first trip to the PURA Conference and event in Philadelphia.  This will be a great adventure for my family and I.  I'm just adventurous enough to bring all of them along, because we are all in this together.
 

We are a small family, the Spadafores of Tulsa: just the 5 of us here, but we are part of a larger clan: grandparents in Tulsa, in Minnesota, in Florida.
 

My wife and I are taking our 3 kids to Philly to meet the rest of our family, from near and far: Our PURA Family.  With just over a 130 of us identified to date, we are the very definition of special!  And special family members need to be met....
 

One of the very reasons that I became involved with the PURA Syndrome Foundation is to meet all of you.  I want to meet you so that we can better support one another.  The PURA Syndrome Foundation has two basic missions: To further research into the condition and to help educate and support our parents and community. To be an international family together. Foundation, families, clinicians and researchers together as one community.
 

To those ends, we are financially stable enough to start to do so this year:  The Foundation is paying about half of the cost of the conference for our families, the cost of food and facility rental.  While we have not done this before, I'm proud to tell you that we are able to do so this year, and expect to continue and expand this into the future.  We are also issuing our first grant this year and expect to continue to do so through out the rest of the year.
 

The Foundation is here to bring us together, and our annual conferences are a great start. 

This is my road to Philadelphia, and I hope to see you there!

Dom

For more conference information visit  https://www.purasyndrome.org/conference17  

 

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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 .