The CF West ‘Challenge the Greenway’ was launched by An Taoiseach Enda Kenny, TD, and Mayor of Castlebar, Cllr Brendan Henaghan last Saturday along with CF committee members and family and friends.
The event, launched a day after CF sufferers received life changing news that Minister for Health, James Reilly reached an agreement with HSE and the manufacturers of the new Cystic Fibrosis drug, Kalydeco, will take place on March 23 next.
Last year the 26 mile challenge saw 200 people walk, cycle and run the Achill to Westport route, raising €21,000. CF West is hoping that money raised this year from Challenge the Greenway will significantly add to the €950,000 already fundraised for building a specialised respiratory unit and daycare centre at Mayo General Hospital for CF sufferers.
Speaking to The Mayo News about the event, Caroline Heffernan from CF West said interest for the event has been great and that organisers are hoping up to 400 people will take part.
Ms Heffernan said that new volunteers are always welcome as organising events usually involve a small group of people.
Although unable to benefit from CF drug which will allow the drug be made available to those with the compatible CF gene, Ms Hefferanan described the announcement as ‘magic’.
With the average life expectancy of an individual with CF currently standing at 30 years, the drug will dramatically improve that, doubling it to 60 for those who have the gene that can be treated by the drug.
“Those who can take the drug can throw the old rule of life expectancy out and now people with CF can think about possibly being grandparents some day.”
“People who can take this drug have basically won the lotto and it’s the closest thing to a cure that has been found, ” she concluded, adding that trials for medication for her CF gene are currently taking place.
Fine Gael TD Michelle Mulherin also welcomed last week’s announcement saying the drug will ‘radically improve the general health of people with CF’, adding that by reducing the need for hospital visits the drug will help ‘free up much-needed isolated beds’.
“Up to this point the drug had been beyond the reach of the vast majority of people with CF due to its extremely high cost. I am glad that a deal has been reached by the HSE with the manufacturer to enable the provision of the drug to all who need it,” said the TD.
People who wish to take part in ‘Challenge the Greenway’ or those who wish to volunteer can see details at challengethegreenway.com or contact Caroline on firstname.lastname@example.org or 087 9323933.
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