Thank-you to all who have signed so far. Please keep encouraging others to, 5000 is the next goal! Here's the latest statement from MDI: Statement from Muscular Dystrophy Ireland – April 12th 2017 Cystic Fibrosis Ireland – Okambi Agreement Reached Muscular Dystrophy Ireland (MDI) would like to congratulate Cystic Fibrosis Ireland (CFI) on their announcement that an agreement has been reached yesterday between the Health Service Executive (HSE) and Vertex Pharmaceuticals for the reimbursement of the ground-breaking drugs Orkambi and Kalydeco. CFI are still waiting to see the full details of the agreement that has been reached. Cystic Fibrosis Ireland understands that it will be inclusive of all patients who have the potential to benefit from Orkambi and Kalydeco because of their particular Cystic Fibrosis genotype. Muscular Dystrophy Ireland would like to thank Cystic Fibrosis Ireland for their solidarity in supporting MDI in their efforts to address similar issues with treatment access. “Cystic Fibrosis Ireland further calls on the HSE to come to a similar positive conclusion for patients with other conditions desperately seeking a drug therapy including patients with Alpha-1; Duchenne muscular dystrophy and cystinosis.” Currently MDI is requesting the HSE to fund the first ever treatment for Duchene Muscular Dystrophy. The drug, called Translarna (also known as Ataluren), has been developed to treat children whose Duchenne Muscular Dystrophy is caused by a ‘nonsense’ mutation. It is the first drug to address an underlying genetic cause of muscular dystrophy to receive approval from the European Medicines Agency. In January 217, MDI received the news that the HSE have not recommended reimbursement of the treatment at this time, despite it being available in over 20 other European Countries. MDI are urging the HSE to reconsider their position.