CF7: Running Festival underway, join our work and money live event, and more

Blog -

Welcome to CF7. Each Friday we share seven pieces of cystic fibrosis (CF) news, resources and community stories from the week.

1. We need your help to improve quality of care

Are you a person with cystic fibrosis? A parent or carer of someone with cystic fibrosis? We need love your help to improve the quality of CF care. We’re setting up an online Quality Improvement (QI) Working Group, where people with CF, parents and clinicians will have an equal say in forming the Trust’s QI strategy and developing key projects that improve CF care and services across the UK. Visit our Quality Improvement page or email to find out more.

2. Choose your distance and get running! 

Our Running Festival kicked off this week with lots of you already signed up to hit the streets, the back garden or around the kitchen. Anyone can join in, no matter their age, ability or location. Watch Stephen talking about why he runs for his brother. 

3. School planner to support people with CF

We know that some schools have asked for advice on how to support those with cystic fibrosis. Did you know that we’ve got Individual Healthcare Plan templates that you can download? The pre-school and primary school planner can be found here, and the secondary planner here.

4. Upcoming event: ‘Work and money – know your rights’

We’re preparing for another engaging and interactive episode of CF LIVE on 23 September. Our next event ‘Cystic fibrosis: Work and money – know your rights’ is aimed specifically at adults with CF, and we’ll be joined by an expert panel who will be on hand to support adults with CF to understand your employment rights, maximise your income and navigate the benefits system. Register now to secure your place.

5. A gift today can help for many years to come

Gifts in Wills are a significant part of our income and knowing that our supporters have included a gift in their Will reassures us that we can continue fighting CF long into the future. It is also a way for you to show others the values you hold close. Find out more about these special gifts.

6. CF in the news

Many children have been returning to school over the last few weeks. Joanna Barrett, our trustee and mum of two boys with cystic fibrosis, spoke to Victoria Derbyshire this week about the boys’ return to school. Joanna also spoke about her family's experience at our recent CF LIVE event about returning to school – you can watch the recording here.

7. Keeping the focus on trial participants

Clinical trials are a vital part of developing new medicines. We’ve written about what we are doing to support trials developing new therapies for CF, and how our work is aligned with the new recommendations issued by the National Institute of Health Research (NIHR) for improving participants’ clinical trial experiences. Read now.

We are facing a substantial drop in our fundraising income, at a time when we're seeing an enormous increase in demand for our services. Please consider making a donation to help us continue our work to support people with cystic fibrosis.

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