100km to beat Myotubular Myopathy
Phil, Craig and Naeem
Thank you to everybody - Robin is a little champion who achieves something special every day. Your support means everything to us.
Katy, Tom + Robin
Raising money for
In October, two of our closest friends welcomed their first child, Robin, into the world.
Robin was born with a rare condition called Myotubular Myopathy: a severe muscle weakness which makes things we take for granted, such as breathing, moving and swallowing, very difficult. He has spent the first months of his life under 24-hour hospital care, with his doting parents at his side.
Myotubular Myopathy affects just 1 in 50,000-100,000 babies. Because of this, there is little research to find treatment, and currently only 1% of boys with the condition survive past 10 years old.
One charity - The Myotubular Trust, who know Robin and have hugely supported our friends - are making strides though. All through networks of affected families, the Trust has raised over £2m to fund research leading to concrete, scientific advances, with a promising gene therapy trial coming from a £103k grant.
More funding is now needed to reach a point where boys like Robin can genuinely benefit. For this to happen, we need your help - anything you can spare could be truly transformative for this wonderful boy, his parents and others like him.
London to Brighton | 100km non-stop
Robin is currently in Brighton, in the care of the Children’s Hospital, and so we wanted to do something which took us there.
We’ve decided to enter the London to Brighton Challenge : a non-stop 100km walk over the second bank holiday weekend in May.
It will be a gruelling task both mentally and physically, but one that will be worth every step if it means making a difference to the lives of those affected by Myotubular Myopathy.
Running / Walking
Event is completed
Find out more
with gift aid: £15,111.25
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