Finding Strength - a family conference

by annieo in London

We did it
On 18th July 2014 we successfully raised £4,475 with 50 supporters in 42 days

A vital family conference for a devastating muscle condition

by annieo in London

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

 

Rewards

This project offers rewards in return for your donation.

£5 or more

£5 Reward

A massive thank you for making a difference.

£10 or more

£10 Reward

A massive thank you for making a difference.

£25 or more

£25 Reward

A massive thank you for making a difference plus a listing on our hall of fame (aka our online thank yous!)

£50 or more

£50 Reward

A massive thank you for making a difference plus a listing on our hall of fame (aka our online thank yous!) And an email after the conference with a link to the post event web page so you can see what a great event you supported.

£100 or more

£100 Reward

A massive thank you for making a difference plus a listing on our hall of fame (aka our online thank yous!) And an email after the conference with a link to the post event web page so you can see what a great event you supported.

Got an idea like this?

Our crowd has raised over £70 million for bright ideas and good causes.