A few thoughts about Endings and Beginnings and MiddlesDear 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...
The Road to Philadelphia from OhioThe Road to Philadelphia From Ohio One of the unique blessings of receiving a diagnosis is finding your Tribe. With a disease as rare as...
The Road to PhiladelphiaDear 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...
Being a PURA DadOn the 8th of September 2011, my world changed forever. Never did I expect to have a child with special needs. However, my little Lily...
Our 2017 conferenceDear parents and families: As President of the Board, I, like the rest of the Board, as well as the medical research community, are...
