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 Pertze 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 Pertze (enzyme), they agreed to sponsor us (through their agency). We had a banner for them from September to December and they were in all our emails at that time too. The Pertzye enzyme is meaningful for this community because as Ratatosk mentioned, we lost Pancreacarb a few years ago which ended up being devastating to some.
Chiese also has Bethkis. We sent out emails three times for Bethkis and three times for Pertze.
I was impressed with the Pertze's animationvideo on the pancreas and enzymes...don't miss it!
We were the ones who originally brought Zenpep to the community. I have been in contact with Actavis (Zenpep) and Abbvie (Creon) to come on board.
When I attended the CFF conferences in the past, the first thing I noticed was all the Industry Leaders for CF were there...hosting dinners, galas, giving out notepads etc to the HCPs.
So I wonder why not here? Why not answer our questions.
Know they are watching.
Fabio Gratton is building a new site for us...making an investment, with ideas on how in this 21st century to bring all the players together.
From our survey, we know this community is ready to move into many new areas! To work with research, to have your questions answered...whether it be about drugs and the risks, where to get the best care, what devices to use and how to use them, how to avoid infections and how to save time!
Our site has the qualitative data that you have provided for 12 years now. We have saved it and 30,000 unique viewers search through it every month! There are close to 3 million messages! We are the Wikipedia of CF.
Our goals are broad. We have created jobs for community members and know through the work we all do that we will continue to grow as the on line summit for all.
Salt and Light,
Jeanne Barnett
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 Pertze 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 Pertze (enzyme), they agreed to sponsor us (through their agency). We had a banner for them from September to December and they were in all our emails at that time too. The Pertzye enzyme is meaningful for this community because as Ratatosk mentioned, we lost Pancreacarb a few years ago which ended up being devastating to some.
Chiese also has Bethkis. We sent out emails three times for Bethkis and three times for Pertze.
I was impressed with the Pertze's animationvideo on the pancreas and enzymes...don't miss it!
We were the ones who originally brought Zenpep to the community. I have been in contact with Actavis (Zenpep) and Abbvie (Creon) to come on board.
When I attended the CFF conferences in the past, the first thing I noticed was all the Industry Leaders for CF were there...hosting dinners, galas, giving out notepads etc to the HCPs.
So I wonder why not here? Why not answer our questions.
Know they are watching.
Fabio Gratton is building a new site for us...making an investment, with ideas on how in this 21st century to bring all the players together.
From our survey, we know this community is ready to move into many new areas! To work with research, to have your questions answered...whether it be about drugs and the risks, where to get the best care, what devices to use and how to use them, how to avoid infections and how to save time!
Our site has the qualitative data that you have provided for 12 years now. We have saved it and 30,000 unique viewers search through it every month! There are close to 3 million messages! We are the Wikipedia of CF.
Our goals are broad. We have created jobs for community members and know through the work we all do that we will continue to grow as the on line summit for all.
Salt and Light,
Jeanne Barnett