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Chris Maynard avatar
Chris Maynard

The Devizes to Westminster International Canoe Race

Kayaking 125 miles non-stop for Spinal Muscular Atrophy UK because my daughter has been diagnosed with SMA type 3

77 %
£1,548.12
raised of £2,000 target
by 33 supporters
Donate
  • Team members: Joseph Maynard (brother)
  • Event: The Devizes to Westminster International Canoe Race, 20 Apr 2019 to 21 Apr 2019

Spinal Muscular Atrophy UK

We offer support to families and individuals affected by SMA

Charity Registration No. 1106815

Story

Thank you so much for taking the time to visit my JustGiving page.

A donation would be awesome however, awareness is key because not enough is being done to tackle the number one genetic killer in infants, Spinal Muscular Atrophy (SMA).

If you can't donate, please, please, please share this page or the information/links below with friends and family.

https://en.wikipedia.org/wiki/Spinal_muscular_atrophy

https://smauk.org.uk

I did not know what SMA was until 10 weeks ago, when me and my wife was given the devastating news that our then 3 year old daughter Alice, was born with an SMN1 gene mutation. She was diagnosed with SMA type 3.

As parents, grandparents, uncles, aunties, cousins, friends etc. we all wish and dream of amazing life outcomes for all children, especially our own.

To witness any illness or ailment take control of this path is truly heartbreaking.

There is no cure as of yet for SMA but there is medication available that would dramatically improve the quality of life for those who have this genetic disease. 

It is called Spinraza.

This is available on NHS Scotland but has not yet been made available to patients in England.

Please join us in our fight to make Spinraza available in England for children with SMA types 1, 2 and 3 by donating and/or sharing this post or it's info and massively improve the potential of many children living a higher quality of life.

Thank you so much in advance.

By the way, the training has been horrible! 

I'll be happy when it's done but my/our fight with SMA will continue!!

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.

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