One month on….

  • Posted by Matt

It’s been a few weeks since CFUnite first launched and we hosted our first live event about the ground-breaking new drug Kalydeco. The dust has settled and so we’ve been able to take stock as we plan the next event.

Since the website went live over 1500 people have visited from 49 countries. Just shy of 100 people attended the live event where Prof Elborn, Dr Boyle, Ed Owen, Prof Smyth and David Noonan discussed Kalydeco. We know more of you would have joined the event but just didn’t know about it until it was too late. Next time we’ll be able to promote events further in advance. The videos of the event have been played almost 1000 times, so at least if you couldn’t attend ‘live’, you haven’t missed much. We’ll also be sending out posters to all the UK based CF clinics so that those that already haven’t heard can also be involved next time.
We’re grateful for those of you that have kindly let us know what you thought about the live event by completing the feedback page. You told us that many of you enjoyed the event and thought it was useful. You’ve also helped us by telling us what you didn’t like and so we’ll be able to change these for next time.

You liked the introductory ‘film’ and thought we could have used this to promote the event. We’ll do this for the next event. Some of you were also frustrated that, although you’d logged in to the event in plenty of time, that you’d get locked out briefly. This was because we were trying to establish a fragile internet link to Dr Boyle in Saudia Arabia. We knew this was ambitious, but felt it was a risk worth taking as any discussion about Kalydeco would have been poorer without the latest trial information. Luckily we had a recording of the presentation to show while we re-established the link (sorry to those watching on your iPhone who couldn’t see it – we know now!). Despite this, Dr Boyle’s presentation discussing CFTR correctors and potentiators for those with the most frequent CF mutation was well worth the challenge.

You also liked Prof Elborn’s presentation of Kalydeco for those with G551D mutation and loved Dr Sheppard’s presentation littered with rusty gates and four-packs of Scrumpy explaining what CFTR actually does.

So if you saw the live event or have watched since please let us know what you thought so we can improve the next one. Get in touch – use the form, send us an email, tweet, facebook, or even put a post-it on a carrier pigeon. However doesn’t matter, just please get in touch.