A RARE MUSCLE CONDITION:
Myotubular myopathy affects babies from birth, mostly baby boys due to the genetic inheritance of the condition. It causes profound muscle weakness and most dangerously, it affects the muscles that control breathing and swallowing.
As a result, even a simple childhood cold is life-threatening. Eighty per cent of children die before their first birthday and one per cent make it to ten years old.
WHO WE ARE:
The Myotubular Trust was founded in 2006 by two mothers of boys with myotubular myopathy. It is the only charity in Europe raising funds for research to find a cure - and the only charity providing specific support to families living with this condition.
OUR REQUEST TO THE CROWD:
Every few years we bring our community of families together for a family conference. The gathering provides families with a direct line to the leading researchers in the field as well as providing them with information about new ways of managing the condition. And, just as important, it brings families together to in a supportive environment to share their experiences, and to ease the sense of isolation that a rare condition can bring.
WHAT WE NEED AND WHY WE ARE ASKING FOR HELP:
We are turning to the crowd simply to ask you to help us to pay for the conference facilities. We would like to use the Holiday Inn in Bloomsbury – close to Great Ormond Street Hospital. We have hired two conference rooms, one for the conference sessions and the other for the children’s crèche and teenagers workshop, both of which allow parents to take part in the day’s events.
The charity was set up in 2006 specifically to raise money for research into a cure and/or treatment for myotubular myopathy.
Every year since then, 100 per cent of the money raised by our supporters has gone into new research projects and we have already funded 9 substantial research grants.
So we would like to raise these specific funds to directly help families living with the condition on a daily basis, while continuing with our mission to find a cure.
ARE YOU WITH US?
The Trust is about finding strength for families living with myotubular myopathy.
We like to say ‘if you can, we can’.
Read more at www.myotubulartrust.org