I don’t have cystic fibrosis. I’ve met a few people that do, but I don’t have the foggiest idea what it’s like to have to count out the creon before each meal or find the time in the day to take all the meds and nebs.
I’m just a junior doctor that pretty much fell into doing CF research. But, after ‘falling into CF’ and after hours of experiments and plugging numbers into a spreadsheet, I have felt the buzz of seeing a beautiful graph showing a clear result. Sometimes there are enough of these rare moments to make a story to take to a conference to tell other scientists. That feels good too.
The problem is though, researchers can talk to themselves to their hearts content, but if it doesn’t make the blindest bit of difference to those with CF, what’s the point? So imagine what it would be like if you – someone with CF or a parent of a child with CF – could make that call: “does this bit of research make any difference?” More importantly, what if you could help plan those studies so that more people would feel able to participate or to help the final result be more relevant in the real world?
I also don’t know what it’s like to hold a CF meeting and have to put on the advert that cruelly ironic phrase “due to cross-infection concerns we cannot allow people with CF to attend”. Sadly it’s a very bad idea to get a group of people with CF in the same room because the bugs would have a field day.
That’s why Cystic Fibrosis Unite was formed. It’s the 21st century and (almost) everyone has access to a computer, a smartphone, or both. So we can get the people who are doing the exciting research and sit them in front of their computer so that they can tell you what they’ve done. And what’s more you can ask questions and tell them what you think.
So that’s what will happen on our first event on 12th January 2013. Dr David Sheppard from University of Bristol will tell us all we ever needed to know about CFTR – the channel in cells that’s ‘wrong’ in cystic fibrosis. Prof Stuart Elborn from Queens University in Belfast will talk us through the first Phase III trial of Kalydeco for people with the G511D mutation. Dr Michael Boyle from Johns Hopkins in the US will tell us the results of the Phase II trial of the combination of Kalydeco and ‘VX-809’ for people with the most common mutation, dF-508. Ed Owen will also be there to let us in on how stressful it was as the powers that be decided if they would fund it or not, as will David Noonan who is now taking Kalydeco.
So join us online on 12 January and take part. If you can’t make it, we’re putting a recording of the event on the website and you can ask your question or make your comment on the forum.