I want to speak on behalf of families and patients with Friedreich's ataxia and muscular dystrophy. I want to speak particularly for Eric Fitzgerald, a young man from Ballyhaunis, in County Mayo, who is losing power and muscle and whose lower limbs have weakened significantly. His condition is getting progressively worse. For Eric, the passage of time means the loss of muscle. It is extraordinarily sad. I met a group of young people with Friedreich's ataxia last month. I met a wonderful young woman called Emily Felix. Emily's story is again exceptionally sad. Emily has started recording her voice because she is losing her voice and losing muscle. That tells you how painful this disease is. There is some hope, however, and that hope is in the form of the medication Skyclarys. It was approved by the European Medicines Agency in 2024. While it is not a full cure, the clinical guidelines show that it will reduce the progression of the disease by half for some patients. For many patients, that is the difference between living and surviving. It would have an immense impact on these young people's lives. I know there is a very important meeting coming up in August. Many families across Ireland are clinging on to hope. I ask the Minister of State to make sure that the voices of these families are heard in that CPU meeting and I ask him to update this House as soon as possible.

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