Story
Muscular Dystrophy UK (MDUK) is the charity for 70,000 people living with muscle-wasting conditions. MD is a muscle wasting disease, meaning that over time all of the body's weaken - including heart and lungs.
I have known Bertie since he was born, and he is a happy and engaging child. When he was 2, he was diagnosed with Collagen VI myopathy. He is now five, and is doing really well at school. He has a fantastic family, but life can be hard.
Thanks to funding for the Ullrich CMD appeal and Collagen VI Alliance, in recent years researchers have discovered a lot about what is happening inside the cells of people with Ullrich CMD. One of the findings is that structures in the cells called mitochondria – which are the ‘batteries’ supplying energy – are not functioning correctly. Two drugs have shown promise – Omigapil and Debio 025. A company called Santhera is conducting a clinical trial of Omigapil in the USA. This trial will involve children with CMD, including Ullrich CMD.
As with anything, the research needs to be funded.
Anything you can spare to sponsor my triathlon will help MDUK with their research.
Lets find a cure, for Bertie and everyone else with a muscle wasting condition!
Thank you
Andrea