janddburke
New member
I thought they were through recruiting for Phase 3 and that the trials had already started?
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Ataluren-the drug that "fixes" the CF gene
- Thread starter Milly
- Start date
janddburke
New member
I thought they were through recruiting for Phase 3 and that the trials had already started?
janddburke
New member
I thought they were through recruiting for Phase 3 and that the trials had already started?
janddburke
New member
I thought they were through recruiting for Phase 3 and that the trials had already started?
janddburke
New member
I thought they were through recruiting for Phase 3 and that the trials had already started?
janddburke
New member
which center in NYC do you go to?
janddburke
New member
which center in NYC do you go to?
janddburke
New member
which center in NYC do you go to?
janddburke
New member
which center in NYC do you go to?
janddburke
New member
which center in NYC do you go to?
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Milly</b></i>
Friday I went to the doctor, and he told me I was eliagible for the phase 3 study of ataluren, the drug that fixes the "nonsense" CF mutation. My mutation is R553X/F508del, meaning that the CFTR gene is there, its just cut short, so it doesnt work. Ataluren finishes this protein, basically fixing the underlying cause of CF. Ive done a ton of research on it, and I feel like theres no downside, theyre going to pay me to get better?! I am a bit freaked though (since they dont yet know the long term side effects), and I have to drive down to Chicago once a month (I live in Milwaukee). Im wondering if anyone else is taking part of this study, or took part in the first two? Or if youve heard how it worked in other CFers...? Im kinda going in blind here and I was just hoping someone else had experience, or if ANYONE had advice? Im just looking for support, i guess.</end quote></div>
Phase 1,2 went well from what I've read and we are all hopeful for phase 3 as well. You'll have to balance internally the potential of unknown side effects and their extent and weigh them against the known side affect of CF.
Thanks for considering participating in the study. Participation is vital to not only this treatment, but paving the way for other developments as well.
Friday I went to the doctor, and he told me I was eliagible for the phase 3 study of ataluren, the drug that fixes the "nonsense" CF mutation. My mutation is R553X/F508del, meaning that the CFTR gene is there, its just cut short, so it doesnt work. Ataluren finishes this protein, basically fixing the underlying cause of CF. Ive done a ton of research on it, and I feel like theres no downside, theyre going to pay me to get better?! I am a bit freaked though (since they dont yet know the long term side effects), and I have to drive down to Chicago once a month (I live in Milwaukee). Im wondering if anyone else is taking part of this study, or took part in the first two? Or if youve heard how it worked in other CFers...? Im kinda going in blind here and I was just hoping someone else had experience, or if ANYONE had advice? Im just looking for support, i guess.</end quote></div>
Phase 1,2 went well from what I've read and we are all hopeful for phase 3 as well. You'll have to balance internally the potential of unknown side effects and their extent and weigh them against the known side affect of CF.
Thanks for considering participating in the study. Participation is vital to not only this treatment, but paving the way for other developments as well.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Milly</b></i>
Friday I went to the doctor, and he told me I was eliagible for the phase 3 study of ataluren, the drug that fixes the "nonsense" CF mutation. My mutation is R553X/F508del, meaning that the CFTR gene is there, its just cut short, so it doesnt work. Ataluren finishes this protein, basically fixing the underlying cause of CF. Ive done a ton of research on it, and I feel like theres no downside, theyre going to pay me to get better?! I am a bit freaked though (since they dont yet know the long term side effects), and I have to drive down to Chicago once a month (I live in Milwaukee). Im wondering if anyone else is taking part of this study, or took part in the first two? Or if youve heard how it worked in other CFers...? Im kinda going in blind here and I was just hoping someone else had experience, or if ANYONE had advice? Im just looking for support, i guess.</end quote></div>
Phase 1,2 went well from what I've read and we are all hopeful for phase 3 as well. You'll have to balance internally the potential of unknown side effects and their extent and weigh them against the known side affect of CF.
Thanks for considering participating in the study. Participation is vital to not only this treatment, but paving the way for other developments as well.
Friday I went to the doctor, and he told me I was eliagible for the phase 3 study of ataluren, the drug that fixes the "nonsense" CF mutation. My mutation is R553X/F508del, meaning that the CFTR gene is there, its just cut short, so it doesnt work. Ataluren finishes this protein, basically fixing the underlying cause of CF. Ive done a ton of research on it, and I feel like theres no downside, theyre going to pay me to get better?! I am a bit freaked though (since they dont yet know the long term side effects), and I have to drive down to Chicago once a month (I live in Milwaukee). Im wondering if anyone else is taking part of this study, or took part in the first two? Or if youve heard how it worked in other CFers...? Im kinda going in blind here and I was just hoping someone else had experience, or if ANYONE had advice? Im just looking for support, i guess.</end quote></div>
Phase 1,2 went well from what I've read and we are all hopeful for phase 3 as well. You'll have to balance internally the potential of unknown side effects and their extent and weigh them against the known side affect of CF.
Thanks for considering participating in the study. Participation is vital to not only this treatment, but paving the way for other developments as well.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Milly</b></i>
Friday I went to the doctor, and he told me I was eliagible for the phase 3 study of ataluren, the drug that fixes the "nonsense" CF mutation. My mutation is R553X/F508del, meaning that the CFTR gene is there, its just cut short, so it doesnt work. Ataluren finishes this protein, basically fixing the underlying cause of CF. Ive done a ton of research on it, and I feel like theres no downside, theyre going to pay me to get better?! I am a bit freaked though (since they dont yet know the long term side effects), and I have to drive down to Chicago once a month (I live in Milwaukee). Im wondering if anyone else is taking part of this study, or took part in the first two? Or if youve heard how it worked in other CFers...? Im kinda going in blind here and I was just hoping someone else had experience, or if ANYONE had advice? Im just looking for support, i guess.</end quote></div>
Phase 1,2 went well from what I've read and we are all hopeful for phase 3 as well. You'll have to balance internally the potential of unknown side effects and their extent and weigh them against the known side affect of CF.
Thanks for considering participating in the study. Participation is vital to not only this treatment, but paving the way for other developments as well.
Friday I went to the doctor, and he told me I was eliagible for the phase 3 study of ataluren, the drug that fixes the "nonsense" CF mutation. My mutation is R553X/F508del, meaning that the CFTR gene is there, its just cut short, so it doesnt work. Ataluren finishes this protein, basically fixing the underlying cause of CF. Ive done a ton of research on it, and I feel like theres no downside, theyre going to pay me to get better?! I am a bit freaked though (since they dont yet know the long term side effects), and I have to drive down to Chicago once a month (I live in Milwaukee). Im wondering if anyone else is taking part of this study, or took part in the first two? Or if youve heard how it worked in other CFers...? Im kinda going in blind here and I was just hoping someone else had experience, or if ANYONE had advice? Im just looking for support, i guess.</end quote></div>
Phase 1,2 went well from what I've read and we are all hopeful for phase 3 as well. You'll have to balance internally the potential of unknown side effects and their extent and weigh them against the known side affect of CF.
Thanks for considering participating in the study. Participation is vital to not only this treatment, but paving the way for other developments as well.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Milly</b></i>
Friday I went to the doctor, and he told me I was eliagible for the phase 3 study of ataluren, the drug that fixes the "nonsense" CF mutation. My mutation is R553X/F508del, meaning that the CFTR gene is there, its just cut short, so it doesnt work. Ataluren finishes this protein, basically fixing the underlying cause of CF. Ive done a ton of research on it, and I feel like theres no downside, theyre going to pay me to get better?! I am a bit freaked though (since they dont yet know the long term side effects), and I have to drive down to Chicago once a month (I live in Milwaukee). Im wondering if anyone else is taking part of this study, or took part in the first two? Or if youve heard how it worked in other CFers...? Im kinda going in blind here and I was just hoping someone else had experience, or if ANYONE had advice? Im just looking for support, i guess.</end quote>
Phase 1,2 went well from what I've read and we are all hopeful for phase 3 as well. You'll have to balance internally the potential of unknown side effects and their extent and weigh them against the known side affect of CF.
Thanks for considering participating in the study. Participation is vital to not only this treatment, but paving the way for other developments as well.
Friday I went to the doctor, and he told me I was eliagible for the phase 3 study of ataluren, the drug that fixes the "nonsense" CF mutation. My mutation is R553X/F508del, meaning that the CFTR gene is there, its just cut short, so it doesnt work. Ataluren finishes this protein, basically fixing the underlying cause of CF. Ive done a ton of research on it, and I feel like theres no downside, theyre going to pay me to get better?! I am a bit freaked though (since they dont yet know the long term side effects), and I have to drive down to Chicago once a month (I live in Milwaukee). Im wondering if anyone else is taking part of this study, or took part in the first two? Or if youve heard how it worked in other CFers...? Im kinda going in blind here and I was just hoping someone else had experience, or if ANYONE had advice? Im just looking for support, i guess.</end quote>
Phase 1,2 went well from what I've read and we are all hopeful for phase 3 as well. You'll have to balance internally the potential of unknown side effects and their extent and weigh them against the known side affect of CF.
Thanks for considering participating in the study. Participation is vital to not only this treatment, but paving the way for other developments as well.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Milly</b></i>
<br />
<br />Friday I went to the doctor, and he told me I was eliagible for the phase 3 study of ataluren, the drug that fixes the "nonsense" CF mutation. My mutation is R553X/F508del, meaning that the CFTR gene is there, its just cut short, so it doesnt work. Ataluren finishes this protein, basically fixing the underlying cause of CF. Ive done a ton of research on it, and I feel like theres no downside, theyre going to pay me to get better?! I am a bit freaked though (since they dont yet know the long term side effects), and I have to drive down to Chicago once a month (I live in Milwaukee). Im wondering if anyone else is taking part of this study, or took part in the first two? Or if youve heard how it worked in other CFers...? Im kinda going in blind here and I was just hoping someone else had experience, or if ANYONE had advice? Im just looking for support, i guess.</end quote>
<br />
<br />Phase 1,2 went well from what I've read and we are all hopeful for phase 3 as well. You'll have to balance internally the potential of unknown side effects and their extent and weigh them against the known side affect of CF.
<br />Thanks for considering participating in the study. Participation is vital to not only this treatment, but paving the way for other developments as well.
<br />
<br />Friday I went to the doctor, and he told me I was eliagible for the phase 3 study of ataluren, the drug that fixes the "nonsense" CF mutation. My mutation is R553X/F508del, meaning that the CFTR gene is there, its just cut short, so it doesnt work. Ataluren finishes this protein, basically fixing the underlying cause of CF. Ive done a ton of research on it, and I feel like theres no downside, theyre going to pay me to get better?! I am a bit freaked though (since they dont yet know the long term side effects), and I have to drive down to Chicago once a month (I live in Milwaukee). Im wondering if anyone else is taking part of this study, or took part in the first two? Or if youve heard how it worked in other CFers...? Im kinda going in blind here and I was just hoping someone else had experience, or if ANYONE had advice? Im just looking for support, i guess.</end quote>
<br />
<br />Phase 1,2 went well from what I've read and we are all hopeful for phase 3 as well. You'll have to balance internally the potential of unknown side effects and their extent and weigh them against the known side affect of CF.
<br />Thanks for considering participating in the study. Participation is vital to not only this treatment, but paving the way for other developments as well.