In many cases they make grants spread over more than one year, enabling the Trust to embark on longer-term projects secure in the knowledge that they have the financial backing to see them through to completion.
The Charitable Trusts and Foundations below are just a few examples of the difference that this support is making to the lives of people living with cystic fibrosis in the UK.
The Robert Luff Foundation
The Robert Luff Foundation has been a very generous supporter of the Cystic Fibrosis Trust over many years. Recent support has been invaluable in enabling us to research new techniques in lung transplantation through the reconditioning of lungs – a technique which aims to increase the number of donated lungs that are suitable for transplant.
In 2015 the Trustees granted £450,000 over three years to support research into understanding and tackling Mycobacterium abscessus infections, which had been found to spread between cystic fibrosis patients in hospitals, in spite of cross infection regulations, and can cause significant lung damage. Tragically, an infection with M. abscessus may even result in patients being taken off the transplant waiting list. Consequently it is vital to tackle these infections, to ensure that no more patients are forced to wait even longer for their much dreamed of lung transplant.
This ongoing research is already having an impact, and recently led to the redesign of the new Papworth Hospital CF Centre to allow high frequent air changes in inpatient and outpatient rooms, so as to reduce the risk of cross infection.
The Joseph Levy Foundation
Joseph Levy was a founding trustee of the Cystic Fibrosis Trust, and was Chairman for nearly two decades, and the Joseph Levy Foundation has since been a long term supporter of the Trusts research work.
The Foundation continues to be a regular and generous supporter, in recent years providing significant support towards the ground breaking work carried out by the Gene Therapy Consortium in investigating the use of gene therapy for cystic fibrosis. This work couldn’t have taken place without the support we received from the Joseph Levy Foundation and many other charitable trusts and foundations. In summer 2015 the consortium published the results of the trials, demonstrating that individuals receiving gene therapy treatments demonstrate improvement in lung function.
The Joseph Levy Memorial Education Fund also help individuals with cystic fibrosis, by funding grants to support young adults with cystic fibrosis through their further education.
Freemasons Grand Charity
In 2015 the Freemason’s Grand Charity made a grant totalling £500,000 over two years in support of an innovative study exploring how remote monitoring can be used to help young people and adults with CF to monitor their condition whilst enabling their specialists to track key health measures without the need for attending clinic appointments.
The Childwick Trust
The Childwick Trust is a long term supporter of the Cystic Fibrosis Trust, most recently supporting the development and pilot of our cystic fibrosis Connect Parents service, which is enabling parents of children newly diagnosed with cystic fibrosis to speak to a trained volunteer who understands what they are going through.
Thanks to the support received from the Childwick Trust we now have almost 40 volunteers trained to provide support and a friendly, patient, listening ear to parents going through the very difficult process of diagnosis, understanding and coming to terms with finding out their newborn baby has a life-limiting genetic condition.
We are very grateful to all the Charitable Trusts and Foundations that have supported the Trusts’ work us over the years. If you have a Charitable Trust, or if you sit on a trustee board and would like further information on the work of the Cystic Fibrosis Trust, please email Chris Yarrington or call 020 3795 1529 and we will be pleased to help.