New Site Coming Soon

Hi my friends! As I was reading through the threads this morning (my initial activity for the last 20 years!) I came across CFinTX question and I thought this would be a good time to reply to his question about the Pyrtze email sent out so here goes: Great Question CFinTX! Back in 1996 when I bought the domain: CysticFibrosis.com and (my partner had CF), I imagined a center for everything CF. That would include patients, caregivers, family members, partners, HCPs and Industry Leaders. We started with pretty simple message boards. The threads were entitled Patients and Families. In 2003, we got a heavy duty database that would hold all the messages! The revolt happened back then, when family/caregivers began to interact with the Patients! It would be unimaginable today for a caste system to exist here...meaning everyone wasn't invited to the different conversations! But that was considered revolutionary back then. We have had different HCPs on our boards at different times. Now, we are blessed with DOT who is a respiratory therapist! She is learning from us and teaching us as she freely joins in the discussion. We have had different Physicians on at different times. I received a phone call two weeks ago from one from a center wanting to make sure all the Physicians had our link in the their list serve...to get a first hand glimpse on patients experience with the Vertex Drug. As for Chiesie's drug Pertzye (enzyme), they agreed to sponsor us (th...
Source: Cystic Fibrosis Adults Forum - Category: Respiratory Medicine Authors: Tags: Adults Source Type: forums