Actor Nicholas Farrell presents our BBC 4 Charity Appeal on Sunday 29th October at 7.55am and 9.25pm, and again on Thursday 2nd November at 3.25pm.
To listen, just switch on Radio 4 via digital radio, FM Radio (FM 92-95FM, 103-105FM) or on channel 704 on Freeview.
You will also be able to listen to it through the BBC Radio 4 website here from Sunday 29th October. Follow our updates on social media and share news of our appeal with the hashtag #R4Appeal.
You can donate by phone or post from Sunday 29th October 2017 or you can donate online now.
Our presenter, Nicholas Farrell, is a well-known British screen and stage actor. Nicholas has been a good friend and supporter of the Myotubular Trust since he read at a Myotubular Trust Christmas Concert.
That night, Nicholas was further drawn to our charity when he met one of our parents, Duncan, and learned about his twin children, Will and Isla. Isla was born a healthy girl, whereas her brother had myotubular myopathy, affecting all of his muscles and his ability to move, breathe and even cry. Very sadly, Will died just before his 3rd birthday, from complications from a simple cold. Although his sister Isla is unaffected, she could be a carrier of the faulty gene causing myotubular myopathy, with the risk of passing it on to her own children.
The Myotubular Trust is working with pioneering scientists internationally to find a way to ‘switch on’ the muscles that cause the severe and life-threatening weakness in myotubular myopathy. Given its rarity, the condition attracts no public awareness or funding – all money raised by the Myotubular Trust has come from affected families, their friends and supporters.
With your support, we will be able to accelerate the pace of research to help children like Will and Isla, and to bring forward the day when children can be treated.
There are a number of areas of investigational research that are currently being looked into, like gene therapy and drug development, which have the promise of treatment or a cure.
Just £45 will pay for an hour’s research, and will help us to continue to fund this important work.
The Myotubular Trust and our community of families would like to thank you for listening to our BBC Radio 4 Appeal and for your support.