by Eva Tucker | Apr 8, 2019 | News
We are thrilled that over 60 families will be participating in the PURA Syndrome EEG Research Study – so far! Just a reminder that enrollment for this study will conclude on Friday, April 19th, 2019 and it is not too late to enroll. The research study being...
by Eva Tucker | Sep 17, 2018 | News
I have several things to share today with all of you. And as is often the case, I’m very proud to do so. 1) For the keen of eye, you will notice that there are subtle changes to the “Foundation” page of the PURAsyndrome.org. As a long overdue...
by Eva Tucker | Jun 8, 2018 | News
Clinical research fellow position at University of Southampton to establish and administer the Global Patient Registry, undertake research into the Natural History of PURA syndrome and publish future papers. June 2018 – The PURA Syndrome Foundation previously...
by Eva Tucker | Feb 27, 2018 | News
Not long ago the 200th case of PURA syndrome was diagnosed globally. This is momentous news for all of us! And I welcome this news as great progress in helping to support our ‘Rare Family’. It increases our ability to support research programs and our...
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...
