PURPLE flower power

BY now, most of us will be aware that cystic fibrosis is Ireland’s most common life-threatening inherited disease. And just a few days ago Dancing With The Stars judge Julian Benson revealed he is a CF sufferer.

But still we don’t know why Ireland has the highest incidence of CF per head of population and some of the most severe types of the condition in the world. According to the most recent Cystic Fibrosis Registry of Ireland annual report, there were an estimated 1,339 people living with CF in Ireland in 2016.

Around one in 19 people are carriers of the CF gene and when two carriers have a child there is a one in four chance of a child being born with it. There is a high prevalence of CF in Europe, with the highest prevalence in Ireland, which is almost three times the average rate in other EU countries and the United States.

So research into the illness is vital for so many people in Ireland, as are specialist units to help those with CF be as well as they possibly can be.

Newsreaders Brian Dobson and Keelin Shanley have come together to help announce details of 65 Roses Day, Cystic Fibrosis Ireland’s annual fundraising appeal taking place on April 13. The organisation was established by parents in 1963, to improve the quality of life of people with CF and their families. It does this through providing information and education, advice and advocacy to people and their families, offering grant assistance, undertaking research, funding state-of-the-art dedicated CF health facilities and CF clinical staff, and advancing the development of lung transplantation.

People are being urged to buy a purple rose in participating shopping centres and Spar stores across Ireland and help raise much-needed funds for cystic fibrosis services.

Almost all of Cystic Fibrosis Ireland’s funding comes from public donations and organisers are hoping to raise more than €100,000 for vital CF services. These include the development of new CF units around the country, incorporating in-patient, day care and out-patient facilities, specialist CF multi-disciplinary posts in hospitals, patient support grants, and medical and scientific research.

‘Cystic fibrosis is such an Irish disease,’ Keelin Shanley explains. ‘Of course, you can find it all over the world, but so many people are diagnosed with the condition here, and we also have some of the most serious types.

‘Undoubtedly, there have been positive developments here with groundbreaking new therapies and improvements in CF treatment and care, but we still have a long way to go.

‘I think this cause is something that we Irish in particular need to rally behind and that we make life that little bit easier for people with the condition.’

FOR RTÉ Radio One Morning Ireland presenter, Bryan Dobson, the prevalence of cystic fibrosis in Ireland is headline news. ‘For me the real headline when it comes to cystic fibrosis is that of all the countries in the world, Ireland is the one with the largest incidence of CF,’ he says.

‘Right now, there are more than 1,300 children, young people and adults who are living with the condition across the country. With the funds raised on 65 Roses Day, we can support these individuals and their families through a range of absolutely essential services.

‘So what we are asking for people to do is to show their true purple colours and buy a purple rose for €2 from any of our volunteers around the country on Friday April 13. People can also undertake a sponsored 65-themed challenge, from doing 65 laps of your local green to walking 6.5km during your lunch break, and, of course, with a quick tap of your phone you can text 65ROSES to 50300 to donate €2.’

If you’d like to volunteer and lend your support on 65 Roses Day by selling purple roses in your community or workplace, simply call Peter on LoCall 1890 311 211, email fundraising@cf

ireland.ie or visit 65rosesday.ie.