A Dublin mother and her five-year-old daughter who suffers from cystic fibrosis are hoping a new campaign will help them secure a significant new drug for the illness.
Marie Duffy and her daughter Grace, from Castleknock, helped launch Cystic Fibrosis Ireland's 'One in 1,000' campaign yesterday. The campaign aims to sign up 1,000 women for the Women's Mini-Marathon on June 5 and to raise €120,000 for treatment of the genetic disorder.
Cystic fibrosis is Ireland's most common inherited life-threatening disease.
Marie, Grace and 550 other sufferers hope a new drug called Orkambi will prove significant in the treatment of the disease.
Hundreds of cystic fibrosis sufferers demonstrated outside the Dáil last Wednesday in support of free access to Orkambi, despite a last-minute appeal by Health Minister Simon Harris to call off the protest.
'Red Rock' stars Ann Skelly and Roisin O'Donovan and RTÉ's Evanne Ní Chuilinn were at the launch.
HEALTH Minister Simon Harris called a leading protester and charity CEO to a private meeting at the Department of Health to ask them to “consider cancelling” a protest for wonder drug Orkambi today, it’s been claimed.
The mum of a teenager with cystic fibrosis (CF) says she has “lost all hope” in the State as she watches her beautiful girl deteriorate when a €160,000 drug could give her quality of life.