Friday 24 July 2015

Welcome to Hack It Up!

Yesterday, we launched Hack It Up!, our new online colloboration and innovation platform designed to bring the CF community together so we can all work on the challenges cystic fibrosis brings.

Today our Community Manager, Emma Lake, who will be acting as the facilitator on Hack It Up! introduces herself and the platform

Hi, I’m Emma, the facilitator at Hack It Up! I have cystic fibrosis and I believe passionately that everyone with the condition and those who help and support us, both at home and in hospital, should help shape the future, through the discussions and decisions that affect our lives.

Our insight and experience is uniquely valuable, we are the ones who are truly experts in living with cystic fibrosis and we need to drive change, delivering impact based on our needs and in our interests.

That’s why I’m thrilled to be a part of Hack it Up, an innovative platform to make our voices heard on the issues that matter.

I am really excited about the first two challenges we have to discuss, and can’t wait to start exploring ideas and sharing our collective expertise.

In the first challenge, we want to find out the tricks and techniques people have developed to manage their CF while still living the life they want to lead.

Together with people with CF, healthcare professionals and industry, the Cystic FibrosisTrust is developing a project called SmartCareCF, to find better, smarter ways of managing care. Before we look ahead though, we need to look at what’s happening right now. What works for you? How do you use technology to keep one step ahead?-

At the same time, we are exploring how being active can help keep lungs healthy for longer. In our second challenge we want to know what activity means to you. What do you do to try and stay healthy? How does it make you feel?

So, get stuck in! Join us in Hack it Up and give us your views and share your experience– there’s a whole community waiting to listen, to learn and to connect.

Once you’ve joined, please invite other people you know who understand life with cystic fibrosis, such as parents, partners, friends, employers and colleagues. I’ve already invited my mum, my husband and my best friend!

Together, we can change the world of cystic fibrosis and shape a better tomorrow.  We just have to get stuck in!

This is an edited version of a blog post from Hack It Up! Join the conversation at

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