Cystic Fibrosis Ireland is once again calling on the Government to conclude its discussions with the drug manufacturer, Vertex Pharmaceuticals, and to give swift approval for the Orkambi therapy, and the extension of the Kalydeco therapy for younger kids.
The plea was made at the launch of Cystic Fibrosis National Awareness Week, which will take place from April 10th to 16th. The flagship fundraising appeal, 65 Roses Day, takes place on Thursday, April 13th, when people can buy a purple rose for €2 or donate online at www.65rosesday.ie.
65 Roses Day Fundraiser - April 13th
Tending carefully to the purple roses on display at the launch of the appeal was RTÉ presenter and Cystic Fibrosis Ireland ambassador, Keelin Shanley. She was joined by brother and sister Tom and Jessica Cassidy from Co. Meath, both of whom have cystic fibrosis.
Shanley is urging people to show their true purple colours and support 65 Roses Day.
"It really is quite astonishing that the incidence of cystic fibrosis in Ireland is higher than anywhere else globally. We also have some of the most severe types," she said.
"For me, I think it's important that we all do what we can to spread the purple in supporting people with cystic fibrosis this 65 Roses Day, Thursday, April 13."
"By simply buying a purple rose for €2, donating online at 65rosesday.ie or undertaking a 65 Roses challenge – whether that be doing 65 laps of the office or baking 65 cakes for a bake sale – you will be making a real difference to people's lives."
"C'mon everyone, let's get our purple on," Shanley added.
The thoughts behind 65 Roses Day
The name comes from the way in which young children are first taught to say the words "cystic fibrosis".
On Thursday, April 13th the country will be awash with purple as volunteers take to the streets and shopping centres selling purple roses with the aim of raising €100,000.
Money raised will go to fund the development of dedicated healthcare facilities, research, counselling and much-needed grant support for people with CF in areas such as transplant assessment, fertility, and bereavement.
How You Can Support:
Members of the public can support people with CF on 65 Roses Day by:
- Buying a Purple Rose for €2
- Completing a 65 Roses Challenge – see www.65rosesday.ie for more details
- Texting "65 Roses" to 50300* to donate €2 or by donating online at www.65rosesday.ie
Volunteer?
Cystic Fibrosis Ireland is looking for people to lend a hand on 65 Roses Day by volunteering to sell purple roses in the community.
For more information, contact Cystic Fibrosis Ireland today on LoCall 1890 311 211, emailfundraising@cfireland.ie, or visit www.65rosesday.ie.
*Text costs €2. Cystic Fibrosis Ireland will receive a minimum of €1.63. Service Provider: LIKECHARITY. Helpline: 076 6805278.
The Time for Orkambi is Now
Speaking at the launch, Philip Watt, CEO of Cystic Fibrosis Ireland, took the opportunity to again highlight the case for approval of the drugs Orkambi and Kalydeco for people with CF.
"Cystic Fibrosis Ireland is heartened by the recent comments of the Minister for Health, Simon Harris TD, that progress is being made in discussions on the approval of new therapies for people with cystic fibrosis," Watt said.
"We agree that a fair deal should be struck and that is why we are calling on all sides to show the generosity of spirit in quickly finalising a mutually-satisfactory arrangement."
"Patients have already been waiting nine months for a positive decision - time that is precious to them. The delays must stop now."
