Skip to main content

100km to beat Myotubular Myopathy

Fundraisers Banner image
Fundraisers Profile image

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
Myotubular Trust

Myotubular Trust Charity Logo

View charity profile

Total raised
£12,735.00

Target
£7500.00

100%

Donations accepted until 26-08-2019

Donate now

View donation summary

About

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.

Event details

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.

Event date

25-May-2019 09:00  - 
26-May-2019 09:00

Event type

Running / Walking

Event is completed

Find out more

YouTube
https://youtu.be/LsX7iH33Jlw

Donations

Well done to you all. Fantastic!
Donation by Graham Strachan
on 15-06-2019
£100.00
£0.00 gift aid
Well done! Fantastic effort for a great cause! X
Donation by Helen Chaplin
on 15-06-2019
Lots of love to all of you. You are never far from our thoughts. You know where we are if you need anything xx
Donation by Debbie and Martin
on 14-06-2019
£75.00
£18.75 gift aid
Well done to you all!
Donation by Ian & Ali
on 02-06-2019
£30.00
£7.50 gift aid
Donation by Anonymous
on 30-05-2019
£20.00
£5.00 gift aid
Donation by Anonymous
on 29-05-2019
£30.00
£7.50 gift aid
Well done Naeem and team - amazing effort!
Donation by Andrew, Shuna, Fred & Fin
on 29-05-2019
£50.00
£12.50 gift aid
Well done Phil & co on a great achievement for a great cause. Naomi
Donation by Naomi
on 29-05-2019
£30.00
£7.50 gift aid
Awesome effort folks! Hope this donation adds to the others in helping nippers and their families get some well deserved help and see this issue off for good! Thinking of you all xx
Donation by Boris & Jess
on 28-05-2019
£20.00
£5.00 gift aid
What an epic bloomin' walk it was - you boys are heroes! All my love and best wishes to Robin, Katy and Tom - you're the real heroes guys xxx
Donation by Simon Burgess
on 28-05-2019
£50.00
£12.50 gift aid

Donation summary

Online Donations: £12,265.00
Offline Donations: £470.00
Total Raised: £12,735.00
Total Raised
with gift aid:    £15,111.25

MyDonate is not responsible for the content fundraisers post on their pages, but if you see something you feel is offensive or inappropriate, please let us know