We had a helpful but emotional meeting yesterday with some ministers in the AV room. We were very grateful to Senator Rose Conway-Walsh for chairing the meeting. We were also incredibly grateful to Michelle Young for travelling over from Scotland to tell us of the incredible effect that Translarna has had for her son. She acknowledged the cost of the treatment but said that that needs to be weighed against the cost-saving of the treatment, in particular the ability to continue in mainstream schooling, the avoidance of the requirement for 24 hour care, the avoidance of the need for spinal surgery and of ventilation. According to Michelle Young, this cost over £1M a year for some boys. Ann Marie also spoke about her desperate need of the drug for Lewis now, every day is costly for them. You can read the write up in the Irish Times, and please encourage your local ministers to ask Simon Harris to enter into negotiation with the Drugs Company to fund the treatment. Thanks for your continued support.