Some of Ireland’s leading stars and personalities have come up smelling of purple roses in an overwhelming show of petal power for Cystic Fibrosis Ireland’s annual flagship fundraising appeal, 65 Roses Day, taking place tomorrow, Friday April 9.
With public collections unfortunately cancelled for the second year running due to COVID-19, Cystic Fibrosis Ireland (CFI) is instead encouraging the public to support people with cystic fibrosis (CF) this 65 Roses Day by donating online at 65RosesDay.ie.
Joining An Taoiseach Micheál Martin TD to strike a pose with a purple rose for 65 Roses Day were: news anchor Bryan Dobson, nutritionist Rosanna Davison, celebrity chef Adrian Martin, Wild Youth frontman, Dave Whelan, columnist and GAA pundit Joe Brolly, TV hosts Mairead Ronan and Diana Bunici, sporting heroes Michael Carruth, Cian O’Connor and Louise Galvin, and singers Brian Kennedy, Jake Carter and Michael English. Accompanying them in painting a rosy picture for 65 Roses Day were Harry Cahill (age 12), who has CF, and his little sister Emily (age 10), from Maynooth, Co. Kildare.
65 Roses Concert
This Friday sees a very special 65 Roses Day concert streamed online at www.cfireland.ie. Featuring a star-studded line-up, special guests include: Brian Kennedy, The High Kings, The Celtic Tenors, Dominic Kirwan, Celine Byrne, Mary Duff, Louise Morrissey and Michael English. Master of Ceremonies for the occasion is the irrepressible RTÉ news anchor, Bryan Dobson. The free concert gets underway at 8pm, with donations gratefully accepted.
Funds raised on 65 Roses Day go to support a range of services for people with CF including funding of hospital CF facilities and staff, research, and patient grants for supports such as counselling, exercise equipment, fertility treatment, and transplant out-of-pocket expenses.
World No 1 for CF
65 Roses Day gets its name from the way children often first say the words “cystic fibrosis”. Ireland has the highest incidence of CF in the world with more than 1,400 people living with CF. Indeed, the incidence of CF in Ireland among the indigenous population is almost three times the average rate in other EU countries and the USA. Ireland also has some of the most severe forms of the disease.
Interim findings from a UCD study conducted during September and October 2020 on the impact of COVID-19 for people with CF has found that the pandemic has significantly affected people’s lives. The study of 118 people with CF and 123 parents of children with CF pointed to concerns around mental health challenges and access to healthcare. Among the findings were:
More than two-thirds of people with CF (74%) experienced mental health issues while parents reported their children with CF suffered similar issues (71%). This result is perhaps reflected in the fact that there was a 34% increase in funding allocated by CFI for its counselling support grants in 2020
Almost half of people with CF (47.5%) had put off a hospital appointment due to COVID-19, impacting access to tests and specialist care.
Living in a Cocooning Bubble
Ruth Cahill, mum to Harry (age 12) who has cystic fibrosis, had been familiar with public health measures long before the pandemic arrived, and believes we need to keep making smart choices. She is excited about being involved in new research on the drug Kaftrio:
“I feel we have been living in a cocooning bubble since the day CF came into our world. The will to protect at all costs the person we love. We already had hand sanitiser in our car, and in every handbag. We had masks in the glove compartment of the car. We moved tables in restaurants or left parties when someone coughed or sneezed near us. We missed Christmases, Easter celebrations, Paddy’s Day, and birthdays over the years due to being in hospital or because we were concerned about catching a virus. Since the pandemic, everyone has been experiencing our daily worries. But life can still be wonderful. Life can still bring you daily joy. Life is for living and we need to keep going. We just need to make smart choices.
The future for people with cystic fibrosis has been transformed in recent years. Twelve years ago, we feared for our child’s future as not only did he have CF but he had a very rare mutation that would be hard to fix. But, last November, our son started a new drug, Kaftrio. We have seen in the past six months how life-changing this drug is. I love that Cystic Fibrosis Ireland and other associations around the world have funded early real-world data studies on this new drug. Our son is part of this study. This data will pave the way to show smaller countries the importance of this incredibly expensive medication. This data will save lives. The future for people with CF is so much brighter. 65 Roses Day is such an important day in the calendar for CF families. We know the funds raised on this day will help the people we love in so many different ways.”
Long Way to Go
For Philip Watt, it is important to recognise the huge leaps that have been made in CF care. However, more needs to be done in terms of new therapies for every person with CF and putting in place fertility supports for those wishing to start a family:
“Thanks to huge leaps in the care of people with cystic fibrosis, and particularly the rollout of life-changing new therapies such as Orkambi and now Kaftrio, the tide is turning in the fight against CF. Almost 12 per cent of the CF population is now over 40 years of age compared with just four per cent in 2009. This is huge progress in a relatively short period of time. This would have been almost unheard of just 20 years ago. CF is becoming a more manageable chronic disease meaning that people with CF can now dream to do things they never thought possible. They are going to college, taking up jobs, buying a home and starting a family. These are things so many of us take for granted but for so long for the CF community, they were a daunting prospect. Not anymore.
“Of course, we still have a long way to go. We need to redouble our efforts to ensure that no one is left behind and that we have innovative treatments for the 10 per cent of people with CF for whom current treatments are not approved. Many people with CF cannot conceive naturally and those wishing to avail of IVF treatment are facing huge financial costs of at least €16,600 for an average of three cycles. Our Government needs to step up to the plate and provide fertility treatment supports for people with CF who wish to start a family. We need to ensure that soft opt-out organ donation is implemented as a matter of urgency so that more and more people with CF can access the transplants that they need. We also need to ensure that shortages in specialised clinical staff in some CF centres are addressed as a matter of urgency. We have travelled far, but there is a long road still to go.”
Long-time Cystic Fibrosis Ireland ambassador, Rosanna Davison, has seen in her wider circle of friends just how challenging life with CF can be:
“I have seen among my wider circle of friends the huge impact that cystic fibrosis can have on a person’s life. From daily medications, nebulisers, chest physio – and that’s when things are good – to fortnight-long stays and longer in hospital when people catch a bug and need to go on intravenous antibiotics. Many people with CF may end up being admitted for lengthy stays two and three times a year. It is a battle with the human condition 24/7. Now in the middle of a pandemic, people with CF have had to cut themselves off from the world in order to keep safe. That’s why 65 Roses Day is so important in letting the CF community know that we have their backs, that we are thinking of them and that we will be there for them now and into the future.”
You can follow Cystic Fibrosis Ireland on Facebook at @CysticFibrosisIreland, and on Twitter and Instagram @cf_ireland. Hashtag is #65RosesDay