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Week 5 - Cystic Fibrosis Trust

on 20/02/2015

Arriving at the impressive building in Kent, I knew my week at Cystic Fibrosis was going to be different from the others. Having been with relatively small charities so far on my Nicest Job journey it's was going to be a learning curve for me being with one much bigger than the rest. I was with the Philanthropy and Strategic Partnerships team helping them with their efforts to raise £11m a year to help enable the charity to survive and contribute a fair whack of that to medical research.

Cystic Fibrosis trust is the only Cystic Fibrosis charity in the country, and thus in a very unique position. Interestingly enough there are only around 10,000 people in the UK with Cystic Fibrosis but the average life expectancy is 41 years old, a far cry from what it was in 1964 when the charity was founded; average life expectancy, 6.

After having a tour and sitting in on a meeting I was keen to make my mark by posting a picture online next to the impressive sign right opposite my desk. "Cystic Fibros' is a fight we must win", you can't deny their boldness. Within hours of posting the picture and at the time of writing this I am at 499 shares and 295 likes (a matter of hours). I was astonished. I post things all the time, so why with this charity have I got such an immediate and profound response?

One thing that really shocked me and I want to highlight is that people who live with Cystic Fibrosis have to be very careful of cross contamination. This basically means that two people with the condition are unable to be in the same room together. There are hundreds of different strains of Cystic Fibrosis and if somebody with the condition gets another strain of the condition is can be incredibly harmful to them. Thus, why the online community of people with the condition is so vibrant. I was amazed to see how many followers and shares that their Twitter and Facebook pages has because so many people living with Cystic Fibrosis live very isolated lives. It is the wonders of technology that bring these people together!

My first day flew by, helping scout out potential trust funds to apply for grants. It's a tough slog I have to say. Fundraising is a hard game and I take my hat off to all the amazing fundraisers out there who did this vital job day in, day out.

I began Tuesday morning slightly nervous, despite not showing it. I had been invited to present at the Cystic Fibrosis Head Office flash meeting, in front of all the staff and volunteers about my journey and time so far on the Nicest Job. I had spent hours on my presentation, constantly adding and changing things but soon enough, half past 11 rolled round and I was ready to go.

Because of the issue of cross contamination, the building is impressively rigged with state of the art technology. This is to allow their community to virtually attend and connect with the charity and its members without fear of passing on germs.

So not only was I presenting to a room of 'real' people, but a load of other 'virtual' people dialled in from all over the country via video link to watch me present on mind blowing journey so far.

I've not seen a group more captivated, even when the slideshow presentation stopped working, I kept talking. I didn't see one pair of eyes leave mine. It really was a great honour to be allowed the privilege to talk to so many amazing people.

After that I was very grateful to have half an hour of the Chief Executives time, Ed Owen. A very humble man whose passion for the trust is apparent the moment you meet him. As the driving force behind the charity, he is keen to one day eradicate this life limiting condition.

The rest of my week flew by with me doing more research, trust letter writing & editing and finding appropriate info on Trusts and their Trustee's. It was eye opening to see the amount of Trusts there are in the country, all giving amazing grants out to truly worthy causes.

Wednesday ended up being a very long but worthwhile day. CF Trust managed to secure a comedy night at the Old Vic Theatre in London. Working with an amazing comedy agent they had arranged a one off evening of laughs and giggles in aid of Cystic Fibrosis. I headed down in the car to the Old Vic Theatre with Chris, one of the fundraisers at CF Trust to set up the foyer. I must embarrassingly admit however, that I've never been to the Old Vic before. I've always wanted to go and tonight was my chance!

We set up the banners and buckets and spent from around 5.30pm til midnight chatting to guests and collecting money. We were also very lucky to be given tickets to the show too and I must say, I've never laughed so hard in all my life. I could hardly breathe at times; live stand up comedy really is the best.

I unfortunately had to cut my week with CF Trust slightly short. My best friend got married. On Thursday morning I started on an 8 hour round trip to make it to the wedding of one of my closest friend's and god daughters mother, Danielle. Danielle and I went to university together and whilst at university, she fell pregnant. Myself, Lou and Danielle ended up living together and raised Bella from birth. It was the most wonderful experience of my life and I will cherish those friendships for as long as I live. So missing the wedding was a big no-no.

I had a very eye-opening week at the CF Trust to say the least. Being in a medium sized charity and understanding how they work has been so different from all my other placements. They have dedicated and passionate teams for every area needed to help drive the charity forward. But I can understand to get to this position takes time, patience and great people; something they have in abundance. They are a testament for all the other small and medium charities out there. When times have been tough they have battled through and in 50 years they've helped, through research and awareness get the average life expectancy from 6 to 41 years old. That by any account is pretty impressive.

Next week is a very exciting week. I have the 'awful' job of spending my week with puppies and dogs at the national breeding centre for Guide Dogs for the Blind. Please, no sympathy needed, I'm sure i'll be fine!

Luke Cameron

Author: Luke Cameron

Good deed enthusiast Luke Cameron has the Nicest Job in Britain. Follow his journey as he travels the country helping a different charity each week.