Trusts and foundations

The Robert Luff Foundation has been a very generous supporter of 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.

Joseph Levy CBE BEM was a founding trustee of Cystic Fibrosis Trust and Chairman for nearly two decades. Peter Levy OBE succeeded his father Joseph as Chairman. The Foundation is a long standing and generous supporter of the Trust and continues to provide significant support to people with cystic fibrosis (CF):

The Joseph Levy Education Fund (JLEF)

The Joseph Levy Education Fund was created through a gift from the Foundation which has provided a permanent endowment, The Joseph Levy Memorial Fund for Education. The Foundation continues to provide additional funding for JLEF through its grant giving programme. JLEF is now administered by the Cystic Fibrosis Trust having for many years been administered by the staff team at the Foundation. People with cystic fibrosis can face extra challenges and costs when studying at higher or further education level. The Fund helps with some of these additional financial costs associated with studying while living with CF.

More information about the Joseph Levy Education Fund can be found here.

Rest & Relax grants

The Foundation created and funded the Cystic Fibrosis Holiday Fund (CFHF) as an independent charity to provide much needed short breaks and holidays for families affected by CF. In 2022 trustees of the CFHF decided to close the charity and transfer the remaining funds and responsibility for short breaks to the Trust.  The Foundation continues to fund this programme. Grants for adults and children are available to fund holidays, breaks, trips, or days out for children and adults with cystic fibrosis who wouldn’t otherwise be able to afford a break.

More information about rest & respite grants can be found here.

Welfare grants provision

For several decades the Foundation has provided funding for welfare grants. These grants make a huge difference to the lives of people with CF, like two-year-old Ruby*:

Ruby's mother approached us for help towards the costs of electricity for heating and cooking. They had moved after spending a considerable amount of time in a damp and cold rented home. They had been waiting for over four months for central heating to be installed in their new home and only had storage heaters which they did not feel confident using. So while Ruby and her mother were waiting for the work to be completed, they were using electric heaters. The Trust provided a welfare grant so that they could afford to use the electric heaters and keep warm.

*Names have been changed.

More information on our welfare grants can be found here.

In 2015 the Masonic Charitable Foundation 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 is a long term supporter of 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.