Today marks the start of National Cystic Fibrosis Awareness week.
C.F Ireland relies on voluntary income and donations to provide services and supports to people with the condition in Ireland.
Claire Merrigan is Chairperson of the Wexford Branch of C.F Ireland.
She explains what will take place this week.
"All week there will be a host of different events and CF challenges."
"I will be doing a skydive on Friday as part of a group of twenty-two CF mammies and staff of CF Ireland as well."
She also explained the difficulties in getting the CF drug Orkambi.
"This is the frustrating part for the people with CF because people with the condition just don't have time on their side."
"Orkambi is a drug which treats the underlying cause of CF as well as treating the condition itself."
"This is the first drug of it's kind for people with this genotype."
"We're so upset that it's taking so long to get. We understand it's a very tough negotiation process and that the price was outrageous at the beginning."
"But we really feel that time is being wasted here."
