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Anne Lennox

Chief Executive and Parent Trustee – Myotubular Trust
United Kingdom

Anne Lennox is mother of Tom (2003 – 2007) who had myotubular myopathy, and brought great joy and delight to their family life for the short while he was with them. Together with Wendy Hughes, mother of Zak, Anne is founder of the Myotubular Trust. Anne ran the Trust on a pro bono basis for 8 years, and has latterly become a paid Trustee. The Myotubular Trust’s core purpose is to raise research funds, has raised over £1,500,000, and funded 11 grants, with the support of an excellent Scientific Advisory Board.

“We were very fortunate that our sons were being looked after by Professor Francesco Muntoni, and being inspired by the work he was doing in NMD, we wondered what we could do to be of help to the research community.  We came to understand the role a disease and gene specific translational research fund could serve, and we set up the Trust in 2006. Along the way too we began to understand the immense potential benefit of a disease specific self-reporting patient registry.  So began a journey where we applied every effort to create this registry in the best way possible for our family community, and the research community. We took great care to consult stakeholders and seek out best practice widely, and got it off the ground in 2013.  Outsourcing to TREAT-NMD was the latest step in the Myotubular Trust’s goal to create a Registry for myotubular and centronuclear myopathy that is a world class asset for us all, and for a very long time to come. “

Anne is Irish, and has lived in London for 27 years. She lives with her husband Andrew, their daughter Sophie who is 16, and son Rory who is 8. Rory, who does not have myotubular myopathy, was born on Tom’s birthday the year after Tom died.  “Sometimes life makes sense”