The Campaign to Bring Givinostat to children with Duchenne Muscular Dystrophy
Fianna Fáil: In Our Own WordsShow Notes
In this episode of Fianna Fáil: In Our Own Words Senator Teresa Costello sits down with Úna Ennis from Tallaght, whose 8 year-old son was diagnosed with Duchenne Muscular Dystrophy (DMD) to discuss their hard fought campaign for access to Givinostat. Senator Teresa Costello has said working with families impacted by a rare muscular disease has given her an insight into “real pain and suffering”. The Fianna Fáil Senator has been campaigning with families of children with Duchenne Muscular Dystrophy (DMD) to access the drug Givinostat, which slows the progression of the disease that gradually causes weakness and loss of muscle function. They are welcoming the recent decision by the HSE drugs group to recommend the approval of the drug for reimbursement and they want to keep the pressure on so that this happens soon. Úna has said said this has has changed the trajectory for Duchenne Muscular Dystrophy and urged the HSE to make the life-changing drug available as soon as possible. In this episode we hear about the fight for Givinostat, the stark reality of living with DMD and the hope that access to Givinostat will bring. This is a powerful conversation about resilience, advocacy and the determination of families who refused to give up. Their message is simple: the treatment exists, and now it must be made available as quickly as possible to the children who need it. 🎧 Listen now to hear the story of Archie and his family and Senator Costello's determination to drive change for families living with Duchenne Muscular Dystrophy.
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