“Breathe With Me” Song Raising Awareness About Cystic Fibrosis ‘Precision Medicine’ Campaign

Emerging Indie pop artist Betsa has recorded a song to raise awareness for an important cause – one that has been making national headlines in recent weeks.

Her new release ‘Breathe With Me’ is a cover of a song about the struggle to breathe for the 70,000+ people around the world who live with the life-limiting disease cystic fibrosis.

Farnham based Betsa was approached by well-known music producer Simon Ellis, to work with him on the track.  Simon who has worked with many major artists including Britney Spears and the Spice Girls, has also previously worked with Betsa and when asked to recommend a singer to perform Breathe With Me, he immediately thought of Betsa’s distinctive vocal style.  He approached her and she was delighted to volunteer her services for such a good cause.

The resultant song is an upbeat number, with a video that features a number of people from the Surrey and Hampshire area who have cystic fibrosis.

The song and video should appeal to BBC Introducing artist Betsa’s growing fan base and comes at a crucial time for the 10,800 strong UK cystic fibrosis community.  Their gruelling campaign for access to cutting edge precision medicines to be made available on the NHS has been making national headlines and is the subject of a current Daily Express ‘Crusade for CF’ campaign.

On Thursday 7th March the Health and Social Care Committee held a public hearing for their ‘Availability of Orkambi on the NHS’ inquiry at Westminster.  On the same day, the Cystic Fibrosis Trust led a protest in Parliament Square for access to life-saving drugs.

Orkambi is a cystic fibrosis modulator drug that has been licensed for use in Europe since November 2015, but is still not available on the NHS in the UK.  The cystic fibrosis community have waged a long campaign to gain access to Orkambi and other CF precision medicines as they become available.

“These medicines work at the root cause of cystic fibrosis instead of just treating the symptoms.” Said Tadworth mum Sharon Cranfield, whose daughter Jessica has been given access to Orkambi on a ‘compassionate’ programme.

“Orkambi can slow the decline of lung function by 42% and reduce the need for hospital stays by 61%.  The triple combination drugs that are currently in trials are promising even better results. We are standing on the edge of a new era of hope for people who are living with cystic fibrosis, but we need access on the NHS now”.

Elizabeth Sheahan (15) from Hampshire appears in the Breathe With Me video.  Her scenes were filmed underwater – an apt location to remind people of the panicky feeling of being unable to breathe as normal.  Elizabeth took part in the video because she is putting her all into advocating for access to cystic fibrosis precision medicine. She has ambitions to be a Lawyer but misses a lot of schooling with all of her health problems. She had just 62% attendance at school last year, but despite this she is a high achieving student, with As and Bs in her mocks. Her family just hope that she stays well enough to do her GCSES this summer as CF is very unpredictable.

Like many with cystic fibrosis Elizabeth looks healthy from the outside.  But as is very common with CF patients she often has to spend two or three weeks in hospital having intravenous antibiotics to prevent or fight infections.

Eight-year-old Emma Frank from Portsmouth was also filmed blowing bubbles ( a visual way to show breath) – One of the bubbles that she blows has the ‘No More CF Angels’ rose image that the UK cystic fibrosis community use as a symbol of their campaign – (see 1.14 on the video counter).

Veronica Lanzetta, from Surrey had a double lung transplant in 2015 and also features in the video.  She took part to address body image problems after transplant. Veronica who has many scars from her battle with cystic fibrosis and transplant, had ‘diseased lungs’ painted on her back for the video.

The Breathe With Me video can be viewed on YouTube at: https://www.youtube.com/watch?v=ZkfwV16JmxY

Anyone wishing to help the campaign can sign this petition: https://petition.parliament.uk/petitions/231602

For more information about Betsa visit https://www.betsamusic.co.uk/

For more information about cystic fibrosis visit:  https://www.cysticfibrosis.org.uk/

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