"Love you Ryker"
"Love you Ryker! 💙 Aunt Joyce"
I donated in support of this campaign.
"Praying for a positive management plan and a cure. He is precious. "
5 years ago a group of super-determined parents, bonded by the PURA diagnosis their children shared, banded together and undertook the monumental task of forming the PURA Syndrome Foundation.
Fast forward a short 5 years later and look how far the PURA Foundation has come! A Global research network of doctors and researchers worldwide working on the PURA gene AND a Global Registry! The Global Registry is an enormous undertaking but will be so important in the plight to find out more information on PURA Syndrome and how it effects individual patients based on the exact mutation in the gene.
Remarkable strides are made possible solely through sheer determination of PURA families, PURA supporters AND donations that set incredible feats of forward progress in motion on behalf of all our PURA kiddos.
As we celebrate the 5th Birthday of PURA Syndrome, we ask that you help us meet our end-of-year goals! We are hoping to raise $15000 by the end of 2019. We also have an anonymous donor willing to donate $5000 if FIVE individuals start campaigns and raise $500 each. Will you help us reach this goal?!
Join me in supporting real change. Let’s support good in the world and make a difference. Help us support the PURA SYNDROME FOUNDATION
Just a small donation will go a long way to helping me meet my goal for the PURA SYNDROME FOUNDATION