by Eva Tucker | Jun 20, 2017 | News
Hi! My name is Karen Bennett and I am the USA Parent Liaison. I am a single Mom of two boys, 26 and 14 years old. My youngest son, William, was diagnosed with PURA in 2015. I sometimes get asked what it’s like to be a single Mom of a medically complex child....
by Eva Tucker | Jun 12, 2017 | News
Dear PURA family: As most of you have heard by now we have gained another PURA angel. Darren was a funny and a kind soul who will surely look out for and comfort his mother and family. The passing of a child is simply one of the most tumultuous things that any human...
by Eva Tucker | May 24, 2017 | News
Dear PURA Friends: I’m glad to be making my first trip to the PURA Conference and event in Philadelphia. This will be a great adventure for my family and I. I’m just adventurous enough to bring all of them along, because we are all in this together. We are...
