3rd Year Challenge Grant Met !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...
Together as a global community...This past weekend the PURA Syndrome Foundation Board of Directors conducted its November meeting. The meeting lasted around 2 hours,...
The gift of diagnosis, that gave us family.Since becoming a mother, I wish my mom friends a happy-anniversary-of-becoming-a-mother to them on their child's birthday. It goes a...
Reflecting upon my new Foundation lifeDear PURAperfect Family: It has been about a month since I first got to meet a number of you, and less than 5 months since joining the...
Learning along the journey....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,...
