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

...my 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

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 women fight to have Orkambi introduced

...next Monday. Ms McNulty has spoken of her dismay over the Health Service Executive’s (HSE) stonewalling on funding for ORKAMBI - the drug that is set to transform the lives of CF sufferers across the world. Chief executive Tony O’Brien has said the...

20 Jan 2016 at 16:43

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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

...she 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

Local News

Longford's Jillian McNulty spearheads second protest at Dáil over Orkambi delays

Jillian McNulty from Longford town, has been on ORKAMBI for 3.5 years and it has completely transformed her life. On Wednesday March 1, Jillian will lead a protest over ORKAMBI delays outside the Dáil from 1.30pm until 2.30pm. "I've gone from needing...

28 Feb 2017 at 15:03

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Crowds gather for Light of Hope CF vigil in Longford town

...Friday’s Light of Hope Vigil for Cystic Fibrosis (CF) which took place across the country. The vigil is part of the #yesORKAMBI campaign. ORKAMBI is a life changing drug for CF patients that is still not available in Ireland, despite months of...

22 Feb 2017 at 16:08

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Crowds gather for Light of Hope CF vigil in Longford town

22 Feb 2017 at 16:00

Local news

CF breakthrough for Jillian

...limits the progress of the disease. Jillian McNulty from Longford town is one of eight over-14s currently trialling the ORKAMBI drug combination in Ireland. “I’ve been trialling it since July of 2013 and since then the condition and my quality of life...

20 May 2015 at 13:30

Arts & Entertainment

Longford campaigner spearheads Valentine's Ball in aid of Cystic Fibrosis

...Longford cystic fibrosis campaigner Jillian McNulty Longford campaigner Jillian McNulty ‘over the moon’ as life changing ORKAMBI to be made available to Cystic Fibrosis sufferers

25 Jan 2018 at 12:00

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Jillian McNulty crowned Longford Person of the Year

...to the fore with her earlier this year as she campaigned for the availability of the breakthrough Cystic Fibrosis drug, ORKAMBI. Acutely aware of the benefits of the drug Jillian threw herself into a campaign to get access for all Cystic Fibrosis...

18 Oct 2017 at 15:00

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Photo Gallery: Longford Person of the Year Jillian McNulty dedicates award to all Cystic Fibrosis sufferers who lost their fight for life

...campaigner Jillian McNulty dedicated her award to all CF sufferers who lost their fight prior to the life changing drug ORKAMBI being made available last April. The two hundred guests gathered in the Longford Arms Hotel on Friday night for the Midlands...

14 Oct 2017 at 15:20

Local News

#Watch: The moment Cystic Fibrosis campaigner Jillian McNulty is announced as Longford Person of the Year

...Director Longford Leader) had the honour of revealing Jillian, who spearheaded the campaign to have the life changing drug ORKAMBI made available here in Ireland for CF sufferers, as the overall winner on a very special night of celebration for Longford....

14 Oct 2017 at 17:52

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