Cystic Fibrosis Gene Therapy trials

[Missdan]

Don't know if you all know, but if this trial can't raise £6k by the end of the month the second phase of the genetic trials will not go ahead, this will mean thousands of pounds wasted from the first phase which was very successful when tested on patients. Please will everyone sign the e petition to the government. My grandaughter suffers from CF along with many more both young and older, if the trials prove positive a cure could be here sooner rather than later. You can also donate through Virgin money or the cystic fibrosis trust site. Thanks it costs nothing to sign.

 

 

https://submissions.epetitions.direct.gov.uk/petitions/17530

[Missdan]

Hope some of the viewers have signed this petition, I am not asking for any donations just for people to sign please. 1 in 4 people carry the faulty Cystic fibrosis gene, put two together and disaster, the average age for survival is only 38 but children as young as 9 are dying from lung disease.

[barleycorn]

Do you have a link to the first phase of research?

 

jb

[Missdan]

Hi, thanks for your interest, you can find out more about the trials on the http://www.cftrust.org.uk and the link to the Gene Therapy Trial update is on the top of the page. Sorry don't know how to post a link.

[Missdan]

How much has gene therapy cost so far and how much are you currently spending?

To get to where we are now – ready to proceed to a multi-dose trial of gene therapy for Cystic Fibrosis – has taken ten years of research and cost well over £30million. The gene therapy trial preparation is costing thousands of pounds per day so a significant portion of our general, unrestricted income is currently being spent funding gene therapy research and will be throughout 2012. This is taken from the CF trust website. All this could go to waste and when the prospects are looking good from the first phase trials.

[medusa]

I wish the CF Trust great luck in raising the money to allow their research and trials to continue, because I understand quite how expensive trials can be. Not only did I used to work in clinical trials, but some of them were supported by the CF Trust and were for specialist antibiotics for use in cystic fibrosis and bronchiectasis.

 

Unfortunately £6k is likely to be a drop in the ocean of whatever is needed to complete this research and if the trials are not backed from the coffers of a drug manufacturer (as they usually are, and this explains the cost of a lot of new drugs) then there's no alternative but to persuade the NHS or a funding charity to raise the money from somewhere to fund the research as there's very little chance for one charity putting their hand out to raise enough funds to proceed with such a huge course of research.

[Missdan]

Yes we all know all this, but when you have a 6 year old child with CF who is looking at going into hospital again within the next couple of weeks, you try anything, even if it is only for everyone on the forum to sign an E petition. All my family and friends have donated but it's impossible for our small family to give all the money needed.

 

For a petition to have to be debated in government we need 100.000 signatures, according to forum figures there are 136,633 registered users, with only a couple of dozen views and only 2 replies to my topic, I feel I am wasting my time, both with the post and Sheffield Forum.