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Thank you for your service!

April 15, 2019

As you may already know, we have had some recent turn over on our board.

 

Unfortunately we have recently had to say "Thank you" for your service to both Mel Anderson and Ceciel van Hoeckel.

 

Mel has been serving as our Medical and Research liaison since we started and had been tireless in her contact with new parents and the research community. 

 

Ceciel has been the international parent liaison since the creation of the Foundation.  Ceciel's multi-lingual capacities and sensitivities to culture allowed her to be a priceless "Welcome to the PURA family" for many of you. 

 

 

Both Mel and Ceciel were founding members of the foundation and gave selflessly of their time. We are sad to have them depart, but understand the additional stresses of life that demand their time.

 

In their absents, Kerry Hildrig continues to be the Parent Liaison, taking on the international aspects for the time being.  If you know anyone, including yourself, who would be interested in joining us, please let me know!  We are also working and meeting with the PURA Syndrome Global Research Network to best support them with regular meetings and ongoing research coordination.  

 

On behalf of the Board of Directors, I want to say

 

Thank You! 

 

to Mel and Ceciel for your service, and wish them both a very happy future! 

 

D

 

Dominic J. Spadafore

President

PURA Syndrome Foundation

d.spadafore@pura-syndrome.com

 

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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 .