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Great to see you in Boston!

 

Dear PURA Family:

It was a wonderful time seeing you in Boston and I'm so glad that you were able to make it there.

 

In all, 102 people attended, representing 6 countries!

 

We got a lot of research updates and had some great conversations about ourselves:  How to help plan for the future, the importance of taking care of the care giver, sharing our personal stories, and much more.  We are processing the videos of many of the presentations and hope to start to share them in the next month.  Look for updates on our web-site!

 

In Boston, I tried to meet each of you, and if I missed any of you, I'm sorry.  I did see a lot people meeting on at lunch and dinner times, and noise was joyous! 

Some of you have been to our conferences before, and for many, this was your first time.  But from the sound of the room, it sounded like a family reunion: rekindling deep and personal friendships formed with us long ago!  This is the power of meeting, and truly the power of Family!  

 

So I wanted to reach out once more to say Thanks!  

 

And a Special thanks to the Conference Committee:

Jon Erickson, Kerry Hildring, Pat and Any Moysenko, and Kris Moysenko. 

We could not have done this without you!

 

Traveling to these events are difficult, it is expensive and never easy to take time away from home.  And I understand how meeting with more PURA families can be emotionally challenging, especially if this is your first time.  There is something concrete about meeting others.  And as personally intimidating as I can find it to be sometimes, I also have always found our meetings to be invigorating.  Constantly reminding me that we are not alone!

 

With that, please don't forget to let us know how we're doing!  You can e-mail me with thoughts and comments.  And I hope to see all of you next year, at the Sanger Institute, Cambridge England Our 5th Conference is schedule for June 26-28, 2020!

 

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 .