Uniting for a life unlimited: 12 ways we've helped make a difference in 2021/22

1. Co-funded a new Strategic Research Centre (SRC)

We co-funded a new SRC on CFTR folding and function, with the aim to design new and innovative medicines to act on the CFTR protein that will make a bigger difference for more people with cystic fibrosis.

2. Launched our #CFTruths campaign

In March 2022, we launched #CFTruths, a public awareness campaign devised by Caitlin, who has CF, and developed pro bono with Ogilvy Health. The campaign sought to raise awareness of CF amongst the general population, to provide a space for our community to share their own #CFTruth, and to enable easier conversations about life with CF, especially in education and the workplace. Since its launch, the campaign has raised vital awareness of CF in the general population. A big thank you to everybody in the CF community who shared their own #CFTruths and got involved. 

3. Our Helpline responded to over 4,200 enquiries

Our Helpline has responded to over 4,200 enquiries from people affected by CF and continued to provide vital support to the community through the COVID-19 pandemic. It is available to anyone looking for information or support with any aspect of cystic fibrosis, a listening ear, or just to talk things through.

4. We helped people with CF to access over £1million in benefits

Since 2016, our Welfare and Rights Advice service has provided expert benefits advice to the CF community. This year, we helped people with CF to access over £1million in benefits, and we also supported 305 people to navigate the benefits system, ensuring they can access the long-term financial support they need to manage the extra costs of living with CF.

5. Supported people with CF to access higher education or vocational training

Through the Joseph Levy Education Fund, we awarded 87 grants totalling just under £47,000 to support people with CF into higher education or vocational training, ensuring they can pursue their education and career goals, and follow their dreams.

6. Launched our COVID-19 Hub

In response to the challenges COVID-19 brought to our community, we launched our COVID-19 Hub where we provided up to date information, responded to questions and queries and made sure everyone across the UK with CF was being supported. Our polls continued to show that our advice and support content was “useful” or “very useful”, including our advice for people who were clinically vulnerable.

7. Helped to improve CF services

The Quality Improvement (QI) team analysed over 1,500 responses to its patient-reported experience surveys. For the first time, the team then provided tailored feedback reports to all children’s and adult CF centres that had taken part in the surveys. These reports help CF services to better understand local patients’ experiences, to evidence existing best practice and to identify areas for quality improvement.

8. Supported those in urgent need to buy the basics needed to stay well

We provided over 940 grants, totalling over £292,000. These grants helped to protect the health of people with CF by supporting those in urgent need to buy the basics needed to stay well, as well as providing access to goods and services to promote long-term health and wellbeing.

Our grants supported people with CF, such as Annie*, a toddler who has CF and requires a specific diet to keep her well. The family are on a low income with no money to spare each month, and through no fault of their own an error with their benefits had left them without enough money for food. Without a grant from us, they would have had to manage with empty shelves and only enough money for very basic food which wouldn’t meet Annie’s needs. 

* name changed for confidentiality

9. Campaigned for the approval of Kaftrio for 6 to 11 year olds across the UK

More than 1,500 children across the UK and Northern Ireland stand to benefit from this drug and limit the damage CF does in these critical early years.

For Stacey, mother of Katy, 8, who has CF, it was  life-changing news:

10. Published a report highlighting research advances in CF and gut health

In response to a list of the CF community’s top 10 health priorities published in 2017, where the relief of GI symptoms was rated as the second highest priority, the Trust is funding vital research in this area. Last year we published a Research in Focus report highlighting progress in research studies to better understand and monitor gut symptoms with CF.

11. 1,047 people with CF have enrolled onto a CTAP clinical trial

Clinical trials are vitally important to our work as they help people access new treatments faster. They are the crucial and significant step in between new medicines being developed in the lab and becoming available for prescription by a doctor. They’re the only way to evaluate whether a new treatment is both safe and effective for use in people – without clinical trials, none of the medications available today, including new modulators, would be available. Since we launched our Clinical Trials Accelerator Platform, 1,047 people with cystic fibrosis (535 children, 512 adults) have now enrolled on to a CTAP clinical trial (321 in the last 12 months). This means we can continue to race towards effective treatments for all.

12. We supported 250 people on low incomes through our Winter Hardship Support Fund

When rapid increases in the cost of living left many with CF worrying about how they would afford to eat properly this winter, we immediately launched a Winter Hardship Support Fund. Through this Fund, we supported 250 people on low incomes with a grant to fund household essentials such as food and energy, protecting their health through the coldest winter months.

We would not have been able to achieve all that we have this year without your support. Whether you’ve enrolled on a clinical trial, have taken part in a survey, held a fundraiser or simply liked and shared our posts on social media, we are so grateful for everything that you do, to help us work towards a future free from the limits of CF.

You can read more about how we've made a difference in 21/22 in our Annual Report. 

Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. It affects more than 10,800 people in the UK. One in 25 of us carries the faulty gene that causes it, usually without knowing. 

Your donations help us fund vital research. Donate today to help everyone with CF live a life unlimited. 

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