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It was a Strawfie September - Let's keep going until #LifeSavingDrugs4CF are available on the NHS

Updated: Oct 13, 2019

September 2019 marked five years of campaigning via the 'Breathe With Me' Strawfie Challenge platform.

With the reality that we are fast heading towards an unbelievable FOUR YEARS that the cystic fibrosis community have been waiting for access to Orkambi (in England, Northern Ireland and Wales) it seemed more important than ever to make our voice heard again.

On September 23rd a short BBC Inside Out (South) documentary was aired for the first time - it has subsequently been shown in several regions.

The programme makers gave us a really good opportunity to ask people to take the 60 seconds straw breathing challenge (Strawfie Challenge) and feel for themselves that horrible feeling of struggling to breathe - feeling as though with each breath you can't quite get enough air into your lungs to breathe easily. Asking people to try this following on from seeing the stories of several CF families on the programme created quite an impact.

If you are not familiar with the Strawfie Challenge click here


Please click the highlighted text to watch a short excerpt from the BBC Inside Out South programme - only takes a few minutes.


Five-year-old Ivy Weir, who has cystic fibrosis, showed Inside Out TV presenter Jon Cuthill how to take the 60 seconds straw breathing challenge, this was mentioned at the end of the report and a Tweet on Inside Out South's Twitter feed showed Ivy and Jon's video. We then asked everyone to try it and post their own Strawfie Challenge photos and videos.

Watch Ivy and Jon's Strawfie Challenge:

The response has been amazing - and every time someone in a pub or at their local gym asks others to take the Strawfie Challenge - it sparks a conversation about cystic fibrosis, which invariably includes explaining about our fight for access to CFTR modulator therapies on the NHS.


Radio and TV presenter Toby Anstis took the challenge - Click for Toby's Strawfie Challenge

Labour Leader Jeremy Corbyn took part - Click for Jeremy Corbyns Strawfie Challenge


So let's keep the awareness going and help build support for our campaign for #LifeSavingDrugs4CF

Here are some ideas of how to take part and raise awareness about cystic fibrosis:

This amazing photo tells the whole story in one image. Crystal Oakley's support has been phenomenal and inspired others to post their #Strawfie 'Looks' using CF colours. These looks and messages have reached out to people outside of the 'CF bubble' and informed them about cystic fibrosis and our fight for life saving drugs to be made available on the NHS


In some cases we have included the messages posted with the selfies/videos. All of these posts were public posts on social media. We shared the messages because they tell the story of how desperate so many people are for access to these life saving CFTR modulator therapies:

  • Breathe through a narrow paper straw, while holding your nose, for 60 seconds.

  • Post a photo or short video of yourself trying this.

  • Briefly explain in your post about the fight for life saving cystic fibrosis drugs to be made available on the NHS as soon as possible - these drugs will save lives.

  • Nominate friends/family to take the Strawfie Challenge too.

  • Use hashtags: #LifeSavingDrugs4CF #StrawfieChallenge #Fight2Breathe and many other hashtags to spread awareness.

Please watch and share Breathe With Me our campaign song, click on yellow highlighted text

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