An eye-opening day with Cystic Fibrosis Trust

savoo meets cystic fibrosis trust

On Tuesday 13th August, Ed and I went along to One Aldgate, London, to meet our new charity partners, Cystic Fibrosis Trust and discuss how we would work together to raise as much money as possible for the cystic fibrosis (CF) community through our affiliate online fundraising programme.

But we came away with so much more than just a fundraising plan.

We left with a genuine understanding of what CF is and how diagnosis impacts the sufferer and their family’s lives, as well as insight into some of the fantastic work that is being done – and more importantly, what’s still left to do.

The reality of cystic fibrosis

Around one in every 2,500 babies born in the UK will be born with cystic fibrosis and there are more than 10,500 people living with the condition in this country today.

Cystic fibrosis is a genetic, degenerative condition that affects the sufferers lungs and digestive system and although there is no cure, advanced treatments are helping to ease symptoms and make the condition easier to live with. CF sufferers now have a life expectancy of around 40 years old compared to an average of just 10 years old not that long ago, which really shows just how far along the community has come.

With breakthrough lifesaving treatment for CF sufferers now emerging more readily thanks to people’s support and donations, we’re hearing of more and more success stories; such as that of Roisin Kelleher from Faversham who recently became the first person in the UK to receive life-saving stem cell treatment for cystic fibrosis.

Sadly, there are still many CF sufferers who the Trust have not had a chance to save. Inspirational teenager Harriet Sheehan tragically passed away from cystic fibrosis in February and the last item on her bucket list was “to give the gift of sight to someone else”. Her wish was fulfilled when her donated eyes saved a 26 year old stranger’s sight two months after her death.

This strength and sense of community amongst cystic fibrosis sufferers and their families seems commonplace, and this unity and determination to make further positive changes was certainly present amongst the team at Cystic Fibrosis Trust.

Working together to overcome barriers and generate donations

We found out during our time with the Trust that people with cystic fibrosis can never meet face to face because of the high risk of cross-infection.

So how do a group of people who cannot meet stay so well connected and supportive of each other?

Technology, social media and the internet all play a huge part in increasing awareness and understanding of cystic fibrosis, and the online world best supports regular and open communication between the CF community and its supporters.

Cystic Fibrosis Trust works hard to ensure that platforms like Facebook and their CF Forum serve as community chatrooms, and they’re aware that exposure to an online audience of new potential donators is essential in helping to treat – and hopefully one day, cure – cystic fibrosis.

Savoo is leading the way with a new style of charitable giving in line with Trust’s focus on ‘online development and outreach’ by launching the new, dynamic fundraising platform – ‘Savoo Search, Save and Raise’ – which essentially brings Savoo’s established e-commerce audience together with free access to an easy-to-use search engine (produced in collaboration with Bing) that donates 1p of Savoo’s money to the users’ chosen charity with every search they conduct.

In addition, Savoo’s voucher code and savings hub also enables users to benefit from discounts and deals with local fashion, travel and technology retailers whilst Savoo donates up to 50% of the commission to the user’s chosen charity.

All donations received by the Cystic Fibrosis Trust come directly from Savoo at no direct cost to the user, and the Trust will then put these donations towards world-class research programmes focused on the development of innovative and life-changing treatments and care. All research programmes are shaped by people who’re affected by cystic fibrosis themselves.

What does success look like?

For Savoo and for the Cystic Fibrosis Trust, success is about making a difference – however big or small.

And although cystic fibrosis is one of the UK’s most common life-threatening inherited diseases, the Trust still doesn’t receive as much support as it should or could.

With a little understanding of the condition and a quick and easy way to donate (that doesn’t even come from your pocket), we’re hoping that this partnership can contribute towards bettering the lives of those either directly or indirectly affected by cystic fibrosis.

Find out more about how you can donate or sign up for free with our affiliate online fundraising programme.

 

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