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Foundation reflections and thank you

January 23, 2018

Dear Friends of PURA syndrome:
 

As we start 2018, I have been reflecting on all that has happened over the past year. And it’s been a great year!

 

We’ve celebrated the 3rd anniversary of the PURA syndrome being first identified, we are also celebrating the second year of the Foundation.  

We’ve had a number of firsts:

  • Our first travel grant - to bring a researcher to our 2017 Conference in Philadelphia

  • Our first Fellowship Grant for research  -  to support research with the Global Patient Registry

  • Our first Foundation sponsored global fundraiser


As a Foundation , we have continued to move forward in our planning and structure. We’ve set up a fundraising platform that our families will be able to interact with to set up their own fundraising events. We purchased insurance and are writing policies for grants, a series of global biobanks, and co-ordination with the Global Research Network.  
 

In Jan 2018 our first planned rotation of board members is occurring.  A hearty THANK YOU to both Sarah Bloom Anderson, our Board Secretary, and Karen Bennett, our US Parent Liaison for their dedication and service to the Foundation. We are currently looking for volunteers to replace these positions on the board, as well as expand the board with a formal Vice President.   
These are all 3 year commitments and provide much needed support to the foundation.

 

Coming up soon we will be posting Foundation meeting schedules, publishing an annual report with facts and figures about our fundraising, operational costs, grants, budgets, etc....  I am a strong advocate of accountability through transparency.  The more you know what we are doing, the easier it is for fundraising, communication, and the better we, as a Foundation, can support you, our families.

 

I am looking forward to 2018!  There will be some challenges and even more great things to be accomplished.  We will keep our mission as the focus of all of our activities: To serve our communities of parents, to help educate our families and clinicians, and to support research into the causes and symptoms of PURA syndrome.

 

2017 was a great year, thanks to your help, your contributions and your support of the Foundation.  
2018 is set to be even better!


D

 

Dominic J. Spadafore


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 .