Simon Zebo, Conor Murray, Keith Earls and Paul Warwick were among thousands who threw their support behind the ‘Breathe With Me’ Strawfie Challenge during National Cystic Fibrosis Awareness Week, writes Denise O'Donoghue.
Many people have posted a ‘straw breathing selfie’, or Strawfie, to highlight the struggle that people with CF face every day, simply to breathe.
Model, actress and singer Nadia Forde posted her own Strawfie on Instagram with the comment “All it took was a few seconds of taking this selfie and I was struggling to breathe.”
Whole families rallied to post messages in support of their loved ones who are fighting CF. The campaign swept across social media channels and support is continuing into this week.
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My pal Buddy asked me to do a #strawfie to raise awareness of Cystic Fibrosis, here's how, #GetCFonEveryonesLips Ever wondered what the daily struggle to breathe feels like for people with Cystic Fibrosis? As it’s CF Awareness Week, why not take our straw breathing challenge and find out… Taking part will help us raise vital funds for all the brave Cystic Fibrosis fighters. The challenge: • Try breathing through a straw with your nose pinched for at least 60 seconds. • Take a straw face selfie and post it on social media using the hash tag #GetCFonEveryonesLips • Text BREATHE to 70500 to donate £5 to Cystic Fibrosis then nominate three friends to take on the challenge next. I nominate my furiends @bobsminiadventures @mayathesausage and the cheeky @jacob_bruno_mini_dachshunds to do a straw selfie ☺️🐾 And of course anyone else that would like to join in and donate 👍❤️❤️
Cystic fibrosis families in Ireland are a community in waiting.
Last week in Ireland the simmering feelings of the CF community erupted into a widespread show of support during the country’s national CF awareness week.
The 60 second straw breathing challenge is part of an international campaign to raise awareness about cystic fibrosis, a life threatening, progressive disease that causes mucus to build up in the lungs, pancreas and other organs. The mucus in the lungs leads to constant infections, resulting in lung damage and eventually respiratory failure.
The disease is progressive and many people with CF describe their declining lung function as ‘feeling like you are breathing through a straw’.
— Conor Murray (@ConorMurray_9) April 15, 2016
Participants in the Strawfie Challenge have to try breathing through a straw for 60 seconds with their nose pinched. They then take a Strawfie performing this action, post it online and make a donation to CF Ireland by texting 65Roses to 50300. In other countries those taking part can donate to their own national CF charity.
Bernie Martin, has a daughter Eva, who has cystic fibrosis. Bernie lives in North County, Dublin and belongs to a support group called CF Mammies. The group were instrumental in helping to spread the campaign.
“We kicked off the Strawfie campaign without any real expectations.” Said Bernie. “If it ended up being a few CF Mammies just raising a little novel awareness in their own circles, so be it - we had nothing to lose.
“But it started to take off, the posts kept on coming and the whole thing was hugely emotional for me. I found the level of support completely overwhelming - to think that so many people wanted to stand in solidarity with us on CF Awareness Week was incredibly uplifting. Having CF in your family can feel lonely at times, but we're not alone, not in the slightest. We have an army of emotional support behind us and that makes us even more determined to kick CF's ass!
“When Eva was diagnosed with CF, we felt like our world was falling apart. But she's the happiest, bravest, funniest little soul and she inspires us every single day to be better people and to fight for a brighter future for her and all who are battling this horrible illness.
“Our online support group is a lifesaver - there's always someone who's been through whatever you're going through and there's always someone to console you when things are rough. It's a group full of great advice but also great friendship.”
— Carol Hickey-Warwick (@CHickeyWarwick) April 15, 2016
Carol Hickey-Warwick who was instrumental in rallying the support of the rugby players said “A friend of mine (Lisa McMahon) who has 2 kids with CF told me about the Strawfie campaign and as myself and my husband Paul Warwick have a five-year-old daughter Éire who has CF we wanted to get as many people involved as we could.
“As Paul is an ex-rugby player (Connacht, Munster, Stade Francais, Worester) we have some lovely friends who have a strong social media presence who were gracious enough to use that for charity and CF awareness. Especially with the wonder drug Orkambi needing to be funded by the HSE we need as much awareness as possible. In 2010 when Éire was born and diagnosed with cystic fibrosis, Munster Rugby was very supportive to us, especially the players partners who rallied around me.
“Éire is half-Irish, half-Australian so we want to spread the word as far as we can for all CF sufferers.”
The Strawfie Challenge started with a rallying song ‘Breathe With Me’ performed by TWF featuring annaJo, a Crawley based singer who has CF.
Irish singer Mary Duff has recorded her own version of Breathe With Me which benefits CF Ireland and is available to download here.
For more information about cystic fibrosis visit https://www.cfireland.ie/