Orkambi - Longford Live -

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Luigi's chips impress Dermot and Dave on their search for 'Ireland's Best Chipper'

...(87%) and Joe’s Kilkenny (83.3%) are the only chippers to score better than Luigi’s. However, Longford’s well known ORKAMBI campaigner Jillian McNulty doesn’t agree with Dermot and Dave and she is adamant that Luigi’s serve up the best chips in the...

04 May 2017 at 02:18

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Alfie Evans supporters to gather in Longford

...Ann suffers from Cystic Fibrosis, and Ms Robinson campaigned hard to get the government to make the life-changing drug ORKAMBI available in Ireland. Fortunately, ORKAMBI was made available to cystic fibrosis sufferers last year. "I know as a mam...

26 Apr 2018 at 17:34

Local News

Irish researchers to lead €3 million study on new cystic fibrosis medication

...to day lives, rather than in controlled clinical trial conditions. Kaftrio (known as TriKafta in the US) is a successor to ORKAMBI. The project, called RECOVER, has been awarded €2.85 million from Cystic Fibrosis Foundation (US), €112,000 from Cystic...

30 Jul 2020 at 16:00

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Longford campaigner Jillian McNulty ‘over the moon’ as life changing Orkambi to be made available to Cystic Fibrosis sufferers

Inspirational Jillian has been campaigning for almost three years for ORKAMBI, a campaign she dubbed on Twitter #mymiracle, to be made available and upon hearing this evening’s news, she enthused, “We finally have ORKAMBI. I’m over the moon. Finally,...

11 Apr 2017 at 21:16

Features

Michael Carruth throws his hat in the ring for Malin2Mizen Cycle4CF 2019

...by respiratory failure. There are certain treatments which can provide some relief to patients of CF, such as the drug ORKAMBI, which was first made available to Irish patients in 2017, when the Minister of Health Simmon Harris struck a deal with...

09 Nov 2018 at 15:15

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VIDEO: Longford Cystic Fibrosis campaigner 'over the moon' as Orkambi funding given green light by government

The local woman has been to the fore of the campaign to have the life saving drugs funded by the Government for the last two and a half years. And, on Tuesday evening her dreams came true! "I am delighted; over the moon," she said. "I just can't ...

13 Apr 2017 at 17:31

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VIDEO: Longford mother and CF campaigner sends emotional message to Health Minister Simon Harris - All we want for Christmas is Orkambi

...has spent eight months in hospital. Mum Hazel firmly believes if her 14-year-old daughter could gain access to the drug ORKAMBI that it would be life changing. At the moment ORKAMBI would cost in the region of €159,000 per patient per year to...

11 Dec 2016 at 22:20

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Longford woman spearheads march for Orkambi outside Dáil Eireann

...their families will descend on the streets in an effort to highlight to the powers that be, the importance of funding ORKAMBI here in Ireland. Speaking to the leader this week Ms McNulty said that CF sufferers had now been waiting nearly five...

21 Nov 2016 at 12:06

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Local woman spearheads Orkambi march at Dáil

Local Cystic Fibrosis (CF) campaigner, Jillian McNulty is spearheading a march to get ORKAMBI funded by the Irish Government. On Wednesday, December 7 at 1:30pm the demonstration will take place outside Dáil Éireann where it is expected that close to...

25 Nov 2016 at 17:00

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'Inspirational Role Model' award for Longford's Jillian McNulty

...Donncha at the Mansion House recently where Cystic Fibrosis Ireland (CFI) honoured her for the efforts made during the ORKAMBI campaign. And then to top it all off, Jillian found herself raising some much needed public awareness about organ...

28 Apr 2018 at 11:00

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Longford people urged to support Cystic Fibrosis Ireland on 65 Roses Day

...mam was told I wouldn’t live past four or five years of age. Over the years, I have successfully campaigned for the drug ORKAMBI, been given compassionate access to Kaftrio and I have recently been incredibly lucky to have had a kidney transplant. So...

11 Apr 2023 at 17:14

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Hidden Hearing Hero Award for Longford cystic fibrosis campaigner Jillian McNulty

...from CF and has campaigned for the rights of CF patients for the past 10 years. Recently she fought for the new drug ORKAMBI to be available to CF patients in Ireland. She led the media and political campaign, showing how ORKAMBI had...

14 Sept 2017 at 10:00

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