Myotubular Trust

Communication and Education Programme

Babies born with Myotubular Myopathy are trapped in a body with vital muscles so weak they are constantly at risk of dying from something as ordinary as a simple cold or cough. Most of these babies will die before their first birthday. We need your help to change this quickly and permanently.

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    Category

  • Health/WellbeingHealth/Wellbeing
  • Medical ResearchMedical Research

    Helping

  • Children (3-18)Children (3-18)
  • Young People (18-30)Young People (18-30)

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Situation

The Myotubular Trust has recently been set up by two mothers of children with Myotubular Myopathy to raise dedicated research funds to find a cure. Myotubular Myopathy is an ‘orphan disease’ – because a relatively small number of children are affected, we are turned down by mainstream funding organisations. But we have been told by pre-eminent scientists that, with a dedicated research programme, a cure is probably no more than 5 – 10 years away. For each of the babies and children affected, a research programme to find a cure means the difference between life and death, and speed really matters. In a little over 3 years we have raised over £480,000 specifically to fund research mainly through activities led by the indomitable spirit of the parents of our babies and children. We have attracted pre-eminent scientists in the field to work with us, and have established a world class peer review process. In addition, we are now embarking on a Communication and Education Programme amongst families of sufferers, clinicians and researchers. Up to this point we have operated as a voluntary organisation with minimal costs. This Programme needs a dedicated Co-ordinator to allow us to provide real time information to families of sufferers and their communities to reduce their isolation and give real hope for the future, to clinicians who without our intervention are often unaware of ever-improving diagnoses and standards of care, and to researchers to enable them to improve the quality and viability of their research. Our Co-ordinator and the Programme will cost us £100,000 over the next 3 years. We have been very successful to date in getting voluntary supporters to contribute funds to pay for medical research. It is a much more difficult ‘ask’ to request money to pay for a member of staff and an information programme. We would like you to support the Communication and Education Programme to give us a solid base from which to make a difference to these children’s lives before it is too late for any of them. It is now simply a race against time for each and every one of our babies and children. Tom Lennox, the son of one of our trustees, was 18 months old when we founded this charity and died just before his 4th birthday. Please help us to win the race for our other children.

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