Welcome to Cystic Fibrosis Unite

  • Posted by Matt

Why ‘Unite’? Well, we hope to bridge the gap between those with cystic fibrosis and those researching CF.

It’s an exciting time in the world of CF research – month by month our understanding of the complex condition that is CF increases bit by bit. Many have described research with a ‘building’ metaphor – that each bit of research is represented by a house brick. Over time the research accumulates, the bricks get put together and the building grows.

Every now and then it’s good to know how well the building work is going. The difficulty is the owners of the building (people with CF) rarely have chance to meet the builders (those researching CF).

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?

The risks of cross-infection mean that any gathering of people with CF is impossible.

Up until now.

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 to tell us what they’ve done. And what’s more you can ask them 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 CF. Prof Stuart Elborn from Queens University in Belfast will talk us through the first big trial of Kalydeco for people with the G511D mutation. And Dr Michael Boyle from John’s Hopkins in the US will tell us the results of the 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 on the 12th January sit down with a cup of tea and slightly stale mince pie and join us (online) and actually take part. If you can’t make it then, we’re putting a recording of the event on the website and you can ask your question or make your comment on the forum.

But on top of this CFUnite is bigger. Also on the website you’ll find summaries of research studies that have just been published in medical journals, written by those that led the studies. They’ll appear on the website at the same time that they’re published in print. That way you, your doctors and researchers can access research at the same time.

Almost every part of CF research is covered – on the site now you can find out what happened when researchers measured the lung function of 3-month-old infants with CF and what their parents thought of being in the study. Researchers in Australia report their attempts at improving vitamin D levels in the those with CF and others report the effects of a safety trial of a new agent that may reduce inflammation in the lungs. All of which you can read and comment upon.

CFUnite is a project in development. We won’t get everything right. We want your help to give you what you want. It will always be free. All we ask is that you tell us what you think. Get in touch. If you can offer 10 minutes of your time every now and then to read a research summary before it gets published to make sure it makes sense, please please get in touch – info@cfunite.org.

To keep in touch with updates and get the link to the event, follow us on Twitter @cfunite or Facebook /cfunite. If not just send us an email info@cfunite.org. If you think you can help, it would also be great to hear from you.

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  • H.A. Soloff

    Congratulations on your excellent endeavor to bring those of us with CF together with those who are researching the disease. In my almost 82 years with CF, I have seen, and actively participated in some amazing changes in developing methodologies, and medications to help those with CF survive through the years. My late wife, children and I lived in, and frequently visited the U.K. for over forty two years. If I can be of service to you, please let me know. I live in Norwich, Connecticut, in New London County, on the Thames River. The city was founded in 1659, so it’s relatively new by your standards.

    • Matt

      Thank you very much for the kind message. We’ll be in touch!