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Alastair Willis

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Fundraising for ACT for SMA

151 %
£1,510.00
raised of £1,000 target
by 81 supporters
Donate
  • In memory of: Callum .
  • Event: Virgin London Marathon 2017, 23 Apr 2017

ACT for SMA

The Ally Cadence Trust provides emotional and financial support to children affected by Spinal Muscular Atrophy Type 1, the leading genetic killer of under 2's with an average life expectancy of just 8 months. Children with SMA have very limited movement and may have breathing difficulties

Charity Registration No. 1133272

Story

I have been lucky enough to secure a place in the 2017 London Marathon.

I will be running in memory of our good friends' little boy, Callum, and supporting the charity Ally Cadence Trust for Spinal Muscular Atrophy (ACT for SMA).  ACT for SMA helps families of children with the devastating condition of Type 1 Spinal Muscular Atrophy.  Children with Type 1 SMA rarely live beyond 12 months, and Callum tragically passed around 6 months.  There is no cure for SMA so the support offered by this charity is so important to the families trying to make their child's final weeks and months as good as they can be.

ACT for SMA is small family charity and public donations make a huge difference.  They support families to get the equipment they need straight away, across the country.  This is how your donation could help:



£10 - Provides a newly diagnosed family with an information pack and telephone / email support

£100 - funds an apnea monitor which alerts parents / carers if the child stops breathing

£300 - funds a selection of sensory toys, including fibre optic lights and light shows or an underwater or DSLR camera to loan to families to record every precious moment

£500 - funds a specialist car seat with pushchair for loan to families.  This enables the child to sit at the correct angle, safely, in the car.

As a father of a young boy I cannot begin to comprehend the impact of this on a family, and if the support offered by ACT for SMA to those families affected makes just one minute of the day better, then it is worth every penny.  Having witnessed the impact of Type 1 SMA on a young family, the support offered by ACT for SMA really is fantastic.



Those who know me may think there is nothing special about me running.  I run regularly and, if I say so myself, reasonably well so where's the challenge.  That isn't important; the important part is supporting the people who can benefit from your generosity.  I would love to finish in under 3 hours - that will be a challenge.  So come on, give whatever you can!

Thank you!

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