In reply to Joanna. I am interested in helping you motivate CF australia to Lobby the government to speed approval. I rang them yesterday and I got an uninformed person who knew nothing at all about VX-770. Possibly there are some more informed people in the organisation. If we want to make it available on a wide scale basis we will need to campaign.
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Fantastic and exciting news at the cf conference..
- Thread starter dasjsmum
- Start date
In reply to Joanna. I am interested in helping you motivate CF australia to Lobby the government to speed approval. I rang them yesterday and I got an uninformed person who knew nothing at all about VX-770. Possibly there are some more informed people in the organisation. If we want to make it available on a wide scale basis we will need to campaign.
ha!! Dont bet on it!!! NONE of the medical professionals at my kids chil or adult cf clinics had ever heard of Vertex when I started talking ot them about it a couple of years ago. I am completely disillusioned regarding the level of knowledge out there with our specialist.
Did you (like me) think that they were all up on the latest cf research?? Ha! that's ajoke. I informed them about it, and then had to put up with the patronising responses directed toward me (after all, Im just a desperate ignorant parent...)....even after I told people about the clinical trial results I still received the same responses.
The V770 is getting some acknowledgement in Australia now, and I dont think they can continue to remain ignorant fo rtoo much longer. Throughout the trial I have updated our cf social worker about my son's results and have sent her info from the conference etc. I hope to get her on board...she is employed by CF Aus and she did ask my son to contribute to the newsletter (which he didnt get aorund to because he is too slcak haha).
The fact is that we will have to chase this thing, we cant rely on others to do it, dont wait for your clinic or doctor. When I have time I will draft a letter and send it to the cf ass. and our local member. I'll send it to you so you can have a look. Are you on facebook?
Did you (like me) think that they were all up on the latest cf research?? Ha! that's ajoke. I informed them about it, and then had to put up with the patronising responses directed toward me (after all, Im just a desperate ignorant parent...)....even after I told people about the clinical trial results I still received the same responses.
The V770 is getting some acknowledgement in Australia now, and I dont think they can continue to remain ignorant fo rtoo much longer. Throughout the trial I have updated our cf social worker about my son's results and have sent her info from the conference etc. I hope to get her on board...she is employed by CF Aus and she did ask my son to contribute to the newsletter (which he didnt get aorund to because he is too slcak haha).
The fact is that we will have to chase this thing, we cant rely on others to do it, dont wait for your clinic or doctor. When I have time I will draft a letter and send it to the cf ass. and our local member. I'll send it to you so you can have a look. Are you on facebook?
ha!! Dont bet on it!!! NONE of the medical professionals at my kids chil or adult cf clinics had ever heard of Vertex when I started talking ot them about it a couple of years ago. I am completely disillusioned regarding the level of knowledge out there with our specialist.
Did you (like me) think that they were all up on the latest cf research?? Ha! that's ajoke. I informed them about it, and then had to put up with the patronising responses directed toward me (after all, Im just a desperate ignorant parent...)....even after I told people about the clinical trial results I still received the same responses.
The V770 is getting some acknowledgement in Australia now, and I dont think they can continue to remain ignorant fo rtoo much longer. Throughout the trial I have updated our cf social worker about my son's results and have sent her info from the conference etc. I hope to get her on board...she is employed by CF Aus and she did ask my son to contribute to the newsletter (which he didnt get aorund to because he is too slcak haha).
The fact is that we will have to chase this thing, we cant rely on others to do it, dont wait for your clinic or doctor. When I have time I will draft a letter and send it to the cf ass. and our local member. I'll send it to you so you can have a look. Are you on facebook?
Did you (like me) think that they were all up on the latest cf research?? Ha! that's ajoke. I informed them about it, and then had to put up with the patronising responses directed toward me (after all, Im just a desperate ignorant parent...)....even after I told people about the clinical trial results I still received the same responses.
The V770 is getting some acknowledgement in Australia now, and I dont think they can continue to remain ignorant fo rtoo much longer. Throughout the trial I have updated our cf social worker about my son's results and have sent her info from the conference etc. I hope to get her on board...she is employed by CF Aus and she did ask my son to contribute to the newsletter (which he didnt get aorund to because he is too slcak haha).
The fact is that we will have to chase this thing, we cant rely on others to do it, dont wait for your clinic or doctor. When I have time I will draft a letter and send it to the cf ass. and our local member. I'll send it to you so you can have a look. Are you on facebook?
ha!! Dont bet on it!!! NONE of the medical professionals at my kids chil or adult cf clinics had ever heard of Vertex when I started talking ot them about it a couple of years ago. I am completely disillusioned regarding the level of knowledge out there with our specialist.
<br />
<br />Did you (like me) think that they were all up on the latest cf research?? Ha! that's ajoke. I informed them about it, and then had to put up with the patronising responses directed toward me (after all, Im just a desperate ignorant parent...)....even after I told people about the clinical trial results I still received the same responses.
<br />
<br />The V770 is getting some acknowledgement in Australia now, and I dont think they can continue to remain ignorant fo rtoo much longer. Throughout the trial I have updated our cf social worker about my son's results and have sent her info from the conference etc. I hope to get her on board...she is employed by CF Aus and she did ask my son to contribute to the newsletter (which he didnt get aorund to because he is too slcak haha).
<br />
<br />The fact is that we will have to chase this thing, we cant rely on others to do it, dont wait for your clinic or doctor. When I have time I will draft a letter and send it to the cf ass. and our local member. I'll send it to you so you can have a look. Are you on facebook?
<br />
<br />Did you (like me) think that they were all up on the latest cf research?? Ha! that's ajoke. I informed them about it, and then had to put up with the patronising responses directed toward me (after all, Im just a desperate ignorant parent...)....even after I told people about the clinical trial results I still received the same responses.
<br />
<br />The V770 is getting some acknowledgement in Australia now, and I dont think they can continue to remain ignorant fo rtoo much longer. Throughout the trial I have updated our cf social worker about my son's results and have sent her info from the conference etc. I hope to get her on board...she is employed by CF Aus and she did ask my son to contribute to the newsletter (which he didnt get aorund to because he is too slcak haha).
<br />
<br />The fact is that we will have to chase this thing, we cant rely on others to do it, dont wait for your clinic or doctor. When I have time I will draft a letter and send it to the cf ass. and our local member. I'll send it to you so you can have a look. Are you on facebook?