by Eva Tucker | Dec 18, 2017 | News
I’ve had more than my fair share of happy news to announce lately, and this is just the next happy moment! In November we secured an anonymous donation for $3,000 with the challenge of raising our donor base and awareness: 300 new donors within 30 days. in...
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...
by Andy Dodds | May 14, 2017 | Stories
On the 8th of September 2011, my world changed forever. Never did I expect to have a child with special needs. However, my little Lily decided to be a 1 in 5.295 million baby….. the population of Scotland at the time! Those first few weeks were so stressful. In and...
