A Heartfelt Thanks to Kerry!

On behalf of the PURA Syndrome Foundation I would like to express our heartfelt ,Thank You to Kerry Hildring for her service to the Foundation. n nSince joining the board in January 2018, Kerry has diligently and passionately served both the Foundation and you, our...

Welcome to Kadidia Cooper!

I am excited to announce that Kadidia Cooper is joining the PURA Syndrome Foundation Board of Directors!nKadidia is joining us as our Treasure. n nKadidia brings an international perspective to the board, having grew up in East Germany and was a young girl when the...

WELCOME! To Todd Vaught!

nI am excited to announce that Todd Vaught has joined the PURA Syndrome Foundation Board of Directors. Todd is bringing his talents as the US Vice President.nTodd has two children, the eldest of who is 25 and has PURA syndrome. Todd brings a number of years experience...

Thank you for your service!

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...

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....

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...
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