Recent Blog Posts
Blog Archive
Search By Tags

Welcome to Amanda Shanks!

I am excited to introduce and give a big Welcome to Amanda Shanks, who joined the PURA Syndrome Board of Directors at the first of the year as our Fundraising Director.

Amanda has been active with the Foundation over most of the last year working with Joanna Horsnail learning the "fundraising ropes".

Some of you met Amanda when she gave a presentation at the 2018 conference in Cambridge, England. She has also been working to support this years 3rd Annual PURA Perfect Night in Chicago, and will be there in person on April 12!

Amanda is a PURA parent and owns her own business in Charlotte, North Carolina.

She can be contacted at:

Amanda, we're excited to have you with us! Thanks for joining!


Dominic J. Spadafore


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 .