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CF7: Kaftrio FAQs, a song for CF, and more

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

1. No one left behind

While we know Kaftrio is a major positive step for many people with CF, the Trust remains fully committed to ensuring the best care, support and treatment for everyone with cystic fibrosis. Read the blog from Dr Keith Brownlee, Director of Policy, Programmes and Support, explaining more. 

doodle of musical notes2. Marc’s song for CF 

You may have heard the wonderful song ‘Thousand Years’ recorded by the very talented Marc Cotterill this week. Marc wrote it after hearing that he had been given compassionate access to Kaftrio. Click here to stream, buy or download Marc’s song. 50% of the sales will be donated to the Cystic Fibrosis Trust and 50% to the Holiday Fund. 

3. Adapting CF care to help people from home

Tracey Daniels, a York based CF physiotherapist, spoke to us about how they have adapted the way they provide care so they can help people with CF from their homes. Watch the video

4. Get involved in our online events for young people 

Our youth programme is running free, weekly online events, where young people from the CF community can make friends, have fun and learn new skills. From games nights, to online workshops, to movie nights, we have something for everyone. If you are aged 8–25 with CF or are close to someone who is, then get in touch at cfyouth@cysticfibrosistrust.org.uk.  

doodle of money with coins and notes5. Changes to financial support during coronavirus  

There have been some changes to the benefits rules and procedures during COVID-19. We have updated our website with how the latest changes may affect you.  

6. FAQ on face masks and face coverings

We have updated our face mask FAQ page, which has information to help you understand the guidance about using face masks. It also includes a new graphic that you can print out or carry on your phone that may help in cases where it’s not be possible to wear a face mask due to breathing difficulties.

7. Answers to your Kaftrio questions 

Following our community event last week, we have updated our FAQs on the triple combination therapy (Kaftrio) with answers to the most common questions we received.  

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.