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CFT impact report 2015/16 v4
Transcript of CFT impact report 2015/16 v4
...including four huge new projects and 12 innovative awards...
We’re breaking down barriers for people with cystic fibrosis...
...helping increase the understanding
of gene therapy...
...that will receive an additional £1.5 million from external sources as a result of our investment.
...and activity as a treatment.
We demand the right
decisions and help the
CF community shout louder.
Our Stopping the Clock campaign demands fair access to precision medicine...
...20,000 of you signed our petition and more than 6,000 people emailed their MPs to support our campaign.
The voice of the CF community cannot be ignored...
UK CF Registry
Our new Registry platform makes it
even easier to transform data
The secure, improved platform holding information on all consenting individuals with CF in the UK makes it easier to use this data in clinical trials, which are notoriously hard to carry out for CF treatments...
...we are working towards people being able to contribute to their own data and even receive invitations to suitable clinical trials.
Support for all
We answered nearly 4,000 calls for help this year...
...by phone or email, we are available to people with cystic fibrosis and their families throughout the week.
Whether they need a shoulder to cry on, or some help from our new Welfare and Rights Advisor to apply for the benefits they deserve, we’re always here.
We invest more money into research into cystic fibrosis than any other charity in the UK...
By inviting young people to help guide our work, we can provide relevant support and guidance to them at the most important time of their lives.
We kicked off our Youth Advisory Group in early 2016...
...as well as awarding seven bright young things our Bright Ideas grant...
...and support to help them build their ambitions into something more.
Our innovative programme investigating the remote monitoring of symptoms by people with cystic fibrosis in their own homes each day is progressing through feasibility studies.
We’re creating the tools to empower people to do things on their own terms, in the way that best suits them.
We’ll fight until everyone has access to the medications that help keep them out of hospital so they can achieve their dreams.
...as a result, the Government has indicated that it is prepared to discuss proposals that could enable patients to access Orkambi at a cost-effective price.
We also teamed up with Parliament for a first-of-its-kind virtual campaigning workshop for the CF community.
4,000 people will need to be assessed for Personal Independence Payments by 2018, and she’s there for each of them.
At your fingertips:
Our new resource for newly diagnosed families has helped empower over 100 families to make the right decisions for them.
29 new CF Connect volunteers have been trained to help support people through their experience of cystic fibrosis.
248 Health & Wellbeing Grants provided £63,000 of support to people in need.
One new scheme in Northern Ireland supports social workers helping people with CF.
Engaging the community
Information and support
UK CF Conference
543 attendees, including nearly 100 friends and family of people with cystic fibrosis...
...topics included psychology, nutrition, activity and pharmacy.
More than 1,500 viewed from home...
...with content seen on Twitter more nearly 150,000 times..
...and reaching 57,000 people with our Facebook posts and videos.
1,500 media items with a reach of 10 million readers and viewers, worth more than £3 million were shared...
...gathering 2,000 new Twitter followers...
...and 238,000 YouTube video views.
50% of users wanted to view the website on a mobile device...
...and there was demand for a better search function.
We’ve delivered both, and there’s more on the way!
To keep us on track,
here are our five themes
to guide us in our quest
for a life unlimited:
Welfare and Rights Advisor
Welcome to our Impact Report 2015/16
This has been an important year, and thanks to the support we receive we’ve been able to invest in cutting-edge research and improve the care and support available to people with cystic fibrosis.
Discover the impact we are having on the lives of people with the condition, and join us on our journey towards a life unlimited.
Youth Empowerment Officer
Gene Therapy Consortium
We invested an additional £600,000 into the Gene Therapy Consortium to help it to continue the development of its gene therapy programme for people with cystic fibrosis...
...which has demonstrated the potential of this therapy for slowing the decline of lung function that limits so many peoples’ lives.
Breathe – Life Unlimited
This year, we unveiled ‘Life Unlimited’.
Our vision for a future where cystic fibrosis doesn’t limit every aspect of the lives of people with the condition...
...was illuminated in the bright lights of Piccadilly Circus...
...and with significant media coverage of Breathe, a music track and video.
We won’t stop until our message is heard loud and clear – we’re fighting for a life unlimited.
We recruited 82 volunteers, including 37 offering peer-to-peer support as part of CF Connect.
Their commitment over the year was worth over £300,000 to the Trust!
Income and Expenditure
Take a look at how we make our income and where we spend it. Full details can be found in our annual Trustees Report on our website.
Thank you to everyone who has supported us and made the impact highlighted in this report possible. Listed below are a few people who have helped us on our way, but we are grateful to have too many supporters to mention them all by name!
Sixty Five Roses Club (England and Scotland)
• Vertex Pharmaceuticals
• The Artemis Charitable Foundation
• PTC Therapeutics Limited
• Pari Medical Ltd
• Gilead Sciences Europe Ltd
• Hard Rock Café London
• Reading Textiles
• Allergan Biologics Ltd
• Benham & Reeves Lettings and Associated Companies
• Robert Luff Foundation Ltd
• Swire Charitable Trust
• Joseph Levy Foundation
• Joseph Levy Education Fund
• Enid Linder Foundation
• Marjorie & Edgar Knight Charitable Trust
• D'Oyly Carte Charitable Trust
• PF Charitable Trust
• QBE Foundation
• Boltini Charitable Trust
• The Welbeing Trust (Sussex)
• Elizabeth and Prince Zaiger Trust
• Pilkington Charities Fund
• The Light Fund
• Constance Travis Charitable Trust
• Cadogan Charity
• Nortan Freeman
• Blyth Watson
• John Raymond Tijou
• Stanley Grundy Foundation
Trusts and Foundations
• Faulkner Family
• Janet and David Lavender
• Nick and Toni Callaghan
• Lord and Lady Sawyer
• Mr and Mrs D Merriman
• Richard Parkinson
• Barbara and Tony Kelley
• Jeremy Wood
• Jane Wood
• James and Catherine Greenstreet
• Tim Miller and Emma Hawkey
• Robert and Jane Aitken
• Charles Van Der Lande
• Keith and Janet Paley
• Jan and Moira De Kok
• Ann and Michael Gaunt
• Alyson and Gilbert Carswell
• Diana and Terence Kyle
• Mr and Mrs Colin Jones
• Rev Iain and Mrs Marjorie Paton
• The Gay and Keith Talbot Trust
• Dame Barbara Kelly
• Laura Main
• Rob Law
Our new Youth Empowerment Officer is getting young people with cystic fibrosis involved in our vision.
Dr Keith Brownlee – Director of Impact