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MP for Newry and Armagh, Dáire Hughes, welcomed the decision to illuminate local civic buildings at the weekend to mark International PKU Day. Phenylketonuria, known as PKU, is a debilitating metabolic condition that affects around 400 people in the north of Ireland.
Dáire said: "This small gesture means a lot to those suffering with this condition and helps to raise awareness of the supports that are available to families managing this condition."
He highlighted the work of campaigner Chris Cassidy, saying: "I've met with PKU campaigner Chris Cassidy both in Westminster and, with his son Daragh and daughter Emily, in Newry. His advocacy is powerful and infectious, and recognised across the north and these islands. Daragh suffers from the condition and the challenges they face are considerable and daily. They work tirelessly to support others living with PKU and to lobby for improved services."
Dáire said he had also raised the issue directly with the Minister for Health. "I've already engaged with the Minister for Health on exploring future opportunities for improved medicines and support. New developments in medicine and technology have great potential in reducing the burden for those living with this condition. We have to be in a position to maximise the potential of these developments," he said.
Concluding, Dáire said: "Chris and Daragh are great advocates for people with PKU and deserve a huge thanks for their continued and remarkable efforts. Thanks also to last year's chairs Cllr Philip Campbell and Cllr Geraldine Kearns for supporting this initiative, and to the Council team. We will continue to support their campaign for better services for everyone suffering with this condition."
