Stephen Morgan MP and Gemma Weir, local CF campaigner, ask the nation’s 650 Members of Parliament to take challenge to understand life with cystic fibrosis
Unable to get air. Every breath a battle. All your energy put into pulling in oxygen. Sound like torture? Whilst Cystic Fibrosis (CF) effects people differently, this is how many people are forced to start their day.
Around 10,400 people in the UK have CF; that’s 1 in every 2,500 babies born. In the last 4 years, it has claimed the lives of over 210 people.
There is a drug available to relieve many of the symptoms and greatly improve the standard of living for many who live with CF. Orkambi is a precision medicine that treats the F508del mutation, which around 50% of people with CF in the UK have.
The problem is that it is not widely distributed because of the cost effectiveness of the drug. However, this is not something that Ivy and campaigners are going to let get in their way.
Writing to MPs across the House of Commons to raise awareness of the challenges CF sufferers face, Portsmouth MP Stephen Morgan said:
“Ivy, an amazing 5-year-old I am lucky enough to have live in Portsmouth, has kick started a campaign and now she needs you to take part.
Someone talking to Ivy once described her condition as like ‘having your mouth forced shut, your nose covered and your only way to breathe through a straw”.
That’s why she’s asking all MPs to take a few simple steps to help improve life for her and many others”.
Ivy’s mum, Gemma, and a cross-party group involving Stephen have already done amazing work with regard to raising awareness for this important cause. They have been tireless in the efforts on social media, lobbying MPs and getting the word out about Orkambi.
The Strawfie Challenge allows people to see what it is like firsthand to have cystic fibrosis and the impact on breathing.
Gemma Weir, from Portsmouth, said:
“Ivy and I are extremely grateful to Stephen for helping us to raise awareness for such an important cause.
Cystic Fibrosis is a devastating disease and Ivy and children like her deserve the chance to access medicines like Orkambi that will dramatically increase their shortened life expectancy and improve their everyday health.
We hope that MPs across the UK will get on board and take part in the Strawfie Challenge and also that it may help them to understand why it is so important to help change the lives of patients living with Cystic Fibrosis in the UK.”
In the rallying cry to fellow MPs, Mr Morgan said:
“Don’t let Ivy in Portsmouth down. Please take these simple steps to raise awareness of the challenges of living with cystic fibrosis and help save lives in the UK”.
Anyone can take the challenge. To do so all we need you to do is follow these simple steps:
1) Find a paper straw
2) Pop it in your mouth
3) Hold your nose and try to breathe as you usually would
4) Take a photo or video of you doing the challenge and post it online using the hashtag #StrawfieChallenge and Twitter handles @strawfie @StephenMorganMP
5) Take the challenge for just one minute!