On Thursday 26th February, during Rare Disease Week, the Myotubular Trust were honoured to have held a fundraising reception at the House of Commons. It was a very happy evening, with great support from friends old and new. The aim of the night, whilst celebrating the passion and commitment of those who support us, was also to raise funds to enable further research investment into all forms of myotubular myopathy.

It is all thanks to friends and supporters like this everywhere, linked to so many of our families with the condition, that the Myotubular Trust has been able to fund nine major research projects . This support has allowed us to be the first charity worldwide investing in gene therapy for myotubular myopathy, which has now come so far that clinical trials are in the offing. It has allowed us to spread the range of research investment across all forms of the condition. It has allowed us to make research grants to scientists worldwide who are investigating other very promising avenues to treatments.

We’re still on the road – please do keep your support coming, no matter how big or small. Every penny truly counts.

Justin Webb, presenter. From BBC Radio 4’s Today programme

‘Beautiful images courtesy of Mike Leski, Promenade Photography http://www.promenadestudios.com/

A great night was had by all and we would like to extend our thanks to all who made the night possible…the guests; the individuals and companies who secured and donated silent auction and raffle prizes; our event sponsor; our host the Minister for Public Health; all our many volunteers for the night, including the Capgemini team; our research community and those of you who brought raffle tickets and made auction bids online.

To see how the Myotubular Trust makes research decisions click here

To read about all research grants made by the Trust click here


Jane Ellison, MP, Minister for Public Health

Professor Francesco Muntoni, Head of the Dubowitz Neuromuscular Centre, Great Ormond St., London and Chair of the Myotubular Trust Scientific Advisory Board

Dr Anna Buj Bello, Genethon, Paris, recipient of the first Myotubular Trust research grant in 2008 (with her proud son, Victor!)