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A New Year, another THANK YOU!!!

Happy New Year to everyone!

A great big THANK YOU to

Joanna Horsnail

for her time on the Board!!!

As the close of 2018 came upon us, out board member is rotating on schedule. And as part of that, I'm very sorry to see Joanna rotate off from our organization. She has been invaluable to us and our development in many roles. She first joined the board as a general member, and stepped in as the interim President, and has since been leading the charge as our main point of contact for Fundraising. In her term she has helped us raise well in excess of $225,000!

In addition, she's spearheaded the work to put together an Event Outline to help other have their own, as well as coordinating our largest annual event, the Chicago PURAperfect Night. She even got the state of Illinois to declare April 28, 2017 as PURA Syndrome Day!

Joanna has helped me in many things while serving together, providing a fresh, honest perspective on things, and her enthusiasm for the foundation is hard to beat! I don't know that I have ever seen her without a smile on her face.

Joanna: on behalf of the foundation: Thank You!!!


Dominic J. Spadafore, AIA


PURA Syndrome Foundation

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 .