question for the UK cfers

J

jaimers

Super Moderator
a very close friend that lives in Italy heard through several of her friends there (that are from London) that there was some cf conference in the UK (i'm assuming in London though she didn't say that specifically) where the researchers running it said they will have a cure in 5 years. they have something they are working on that has been working in their test subjects.

My friend really wasn't very clear on the details such as drug names, who the researchers were or anything but i wanted to check on here as a long shot to see if any of you UK cfers here know what they are talking about? As a sort of older cfer i am skeptical of the word "cure" but she was so excited to call and tell me the news and it made me curious to know what they were talking about?

Is it just the vx809, ptc124 etc. that they are talking about?
 
J

jaimers

Super Moderator
a very close friend that lives in Italy heard through several of her friends there (that are from London) that there was some cf conference in the UK (i'm assuming in London though she didn't say that specifically) where the researchers running it said they will have a cure in 5 years. they have something they are working on that has been working in their test subjects.

My friend really wasn't very clear on the details such as drug names, who the researchers were or anything but i wanted to check on here as a long shot to see if any of you UK cfers here know what they are talking about? As a sort of older cfer i am skeptical of the word "cure" but she was so excited to call and tell me the news and it made me curious to know what they were talking about?

Is it just the vx809, ptc124 etc. that they are talking about?
 
J

jaimers

Super Moderator
a very close friend that lives in Italy heard through several of her friends there (that are from London) that there was some cf conference in the UK (i'm assuming in London though she didn't say that specifically) where the researchers running it said they will have a cure in 5 years. they have something they are working on that has been working in their test subjects.

My friend really wasn't very clear on the details such as drug names, who the researchers were or anything but i wanted to check on here as a long shot to see if any of you UK cfers here know what they are talking about? As a sort of older cfer i am skeptical of the word "cure" but she was so excited to call and tell me the news and it made me curious to know what they were talking about?

Is it just the vx809, ptc124 etc. that they are talking about?
 
J

jaimers

Super Moderator
a very close friend that lives in Italy heard through several of her friends there (that are from London) that there was some cf conference in the UK (i'm assuming in London though she didn't say that specifically) where the researchers running it said they will have a cure in 5 years. they have something they are working on that has been working in their test subjects.

My friend really wasn't very clear on the details such as drug names, who the researchers were or anything but i wanted to check on here as a long shot to see if any of you UK cfers here know what they are talking about? As a sort of older cfer i am skeptical of the word "cure" but she was so excited to call and tell me the news and it made me curious to know what they were talking about?

Is it just the vx809, ptc124 etc. that they are talking about?
 
J

jaimers

Super Moderator
a very close friend that lives in Italy heard through several of her friends there (that are from London) that there was some cf conference in the UK (i'm assuming in London though she didn't say that specifically) where the researchers running it said they will have a cure in 5 years. they have something they are working on that has been working in their test subjects.
<br />
<br />My friend really wasn't very clear on the details such as drug names, who the researchers were or anything but i wanted to check on here as a long shot to see if any of you UK cfers here know what they are talking about? As a sort of older cfer i am skeptical of the word "cure" but she was so excited to call and tell me the news and it made me curious to know what they were talking about?
<br />
<br />Is it just the vx809, ptc124 etc. that they are talking about?
 
S

saveferris2009

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jaimers</b></i>

a very close friend that lives in Italy heard through several of her friends there (that are from London) that there was some cf conference in the UK (i'm assuming in London though she didn't say that specifically) where the researchers running it said they will have a cure in 5 years. they have something they are working on that has been working in their test subjects. </end quote></div>


<div class="FTQUOTE"><begin quote>
My friend really wasn't very clear on the details such as drug names, who the researchers were or anything </end quote></div>

How is that possible? If I were your Italian friend I'd want to know the exact details - I find it very odd that simple details like that aren't known.

In addition, i can't stand when docs/ researchers make cure claims in x years claims. so irresponsible.

anyway, a very quick google search resulted in this (plus I've heard about it on other CF sites):

there is some gene therapy being researched in the UK. <a target=_blank class=ftalternatingbarlinklarge href="http://www.guardian.co.uk/science/2009/apr/19/cystic-fibrosis-research
">http://www.guardian.co.uk/scie...tic-fibrosis-research
</a>

As with anything - I'll believe it when it's in my hands.

My guess is there aren't enough UK CFer's to run large scale trials so they'll be forced to run trials internationally (US companies do the same). So if things go as they say, perhaps some will be involved in the trials.
 
S

saveferris2009

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jaimers</b></i>

a very close friend that lives in Italy heard through several of her friends there (that are from London) that there was some cf conference in the UK (i'm assuming in London though she didn't say that specifically) where the researchers running it said they will have a cure in 5 years. they have something they are working on that has been working in their test subjects. </end quote></div>


<div class="FTQUOTE"><begin quote>
My friend really wasn't very clear on the details such as drug names, who the researchers were or anything </end quote></div>

How is that possible? If I were your Italian friend I'd want to know the exact details - I find it very odd that simple details like that aren't known.

In addition, i can't stand when docs/ researchers make cure claims in x years claims. so irresponsible.

anyway, a very quick google search resulted in this (plus I've heard about it on other CF sites):

there is some gene therapy being researched in the UK. <a target=_blank class=ftalternatingbarlinklarge href="http://www.guardian.co.uk/science/2009/apr/19/cystic-fibrosis-research
">http://www.guardian.co.uk/scie...tic-fibrosis-research
</a>

As with anything - I'll believe it when it's in my hands.

My guess is there aren't enough UK CFer's to run large scale trials so they'll be forced to run trials internationally (US companies do the same). So if things go as they say, perhaps some will be involved in the trials.
 
S

saveferris2009

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jaimers</b></i>

a very close friend that lives in Italy heard through several of her friends there (that are from London) that there was some cf conference in the UK (i'm assuming in London though she didn't say that specifically) where the researchers running it said they will have a cure in 5 years. they have something they are working on that has been working in their test subjects. </end quote></div>


<div class="FTQUOTE"><begin quote>
My friend really wasn't very clear on the details such as drug names, who the researchers were or anything </end quote></div>

How is that possible? If I were your Italian friend I'd want to know the exact details - I find it very odd that simple details like that aren't known.

In addition, i can't stand when docs/ researchers make cure claims in x years claims. so irresponsible.

anyway, a very quick google search resulted in this (plus I've heard about it on other CF sites):

there is some gene therapy being researched in the UK. <a target=_blank class=ftalternatingbarlinklarge href="http://www.guardian.co.uk/science/2009/apr/19/cystic-fibrosis-research
">http://www.guardian.co.uk/scie...tic-fibrosis-research
</a>

As with anything - I'll believe it when it's in my hands.

My guess is there aren't enough UK CFer's to run large scale trials so they'll be forced to run trials internationally (US companies do the same). So if things go as they say, perhaps some will be involved in the trials.
 
S

saveferris2009

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jaimers</b></i>

a very close friend that lives in Italy heard through several of her friends there (that are from London) that there was some cf conference in the UK (i'm assuming in London though she didn't say that specifically) where the researchers running it said they will have a cure in 5 years. they have something they are working on that has been working in their test subjects. </end quote>


<div class="FTQUOTE"><begin quote>
My friend really wasn't very clear on the details such as drug names, who the researchers were or anything </end quote>

How is that possible? If I were your Italian friend I'd want to know the exact details - I find it very odd that simple details like that aren't known.

In addition, i can't stand when docs/ researchers make cure claims in x years claims. so irresponsible.

anyway, a very quick google search resulted in this (plus I've heard about it on other CF sites):

there is some gene therapy being researched in the UK. <a target=_blank class=ftalternatingbarlinklarge href="http://www.guardian.co.uk/science/2009/apr/19/cystic-fibrosis-research
">http://www.guardian.co.uk/scie...tic-fibrosis-research
</a>

As with anything - I'll believe it when it's in my hands.

My guess is there aren't enough UK CFer's to run large scale trials so they'll be forced to run trials internationally (US companies do the same). So if things go as they say, perhaps some will be involved in the trials.
 
S

saveferris2009

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jaimers</b></i>
<br />
<br />a very close friend that lives in Italy heard through several of her friends there (that are from London) that there was some cf conference in the UK (i'm assuming in London though she didn't say that specifically) where the researchers running it said they will have a cure in 5 years. they have something they are working on that has been working in their test subjects. </end quote>
<br />
<br />
<br /><div class="FTQUOTE"><begin quote>
<br />My friend really wasn't very clear on the details such as drug names, who the researchers were or anything </end quote>
<br />
<br />How is that possible? If I were your Italian friend I'd want to know the exact details - I find it very odd that simple details like that aren't known.
<br />
<br />In addition, i can't stand when docs/ researchers make cure claims in x years claims. so irresponsible.
<br />
<br />anyway, a very quick google search resulted in this (plus I've heard about it on other CF sites):
<br />
<br />there is some gene therapy being researched in the UK. <a target=_blank class=ftalternatingbarlinklarge href="http://www.guardian.co.uk/science/2009/apr/19/cystic-fibrosis-research
">http://www.guardian.co.uk/scie...tic-fibrosis-research
</a><br />
<br />
<br />As with anything - I'll believe it when it's in my hands.
<br />
<br />My guess is there aren't enough UK CFer's to run large scale trials so they'll be forced to run trials internationally (US companies do the same). So if things go as they say, perhaps some will be involved in the trials.
 
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