Orla’s story
Rian has myotubular myopathy. He is a fun, cheeky, smart 11 year old. His condition is very rare and severe, and there are no other boys in Ireland living with this disease. Myotubular myopathy and Centronuclear myopathy cause life threatening muscle weakness, particularly impacting on breathing. Since 2006 the Myotubular Trust have funded medical and scientific research with the aim of finding a treatment or a cure for these conditions. Great leaps forward have been made and early stage drug trials are currently underway. These drugs have the potential to help a range of muscular dystrophies not just children with MTM. Please, if you can, help us fundraise for medical research! Rare disease research is very underfunded, and the Myotubular Trust mostly relies on friends and families to help! Thank you and Happy Christmas.
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