Running in 2017, 2018 and 2019 for ACT for SMA
Fundraising for ACT for SMA
The Ally Cadence Trust provides support to families affected by Spinal Muscular Atrophy Type 1. Children with SMA Type 1 have limited movement and may have breathing difficulties. We offer many items of specialist equipment to them that are not readily available on the NHS
Charity Registration No. 1133272
As you know, Sophie & I welcomed Joe to the world in August 2016, changing our lives forever.
During the pregnancy, we joined an NCT group, making great new friends to share this experience with.
Whilst all eight babies were born safely, we were devastated to learn that one baby, Lucas, has been diagnosed with Spinal Muscular Atrophy (SMA).
Unfortunately the prognosis was not good & Lucas passed away in early 2017.
SMA is a genetic disease that is currently incurable & often fatal.
Ally Cadence died of SMA aged just six months, 12 days after she was diagnosed. Her parents set up ACT for SMA to provide support to sufferers of SMA and their families.
ACT for SMA have already provided wonderful support for Lucas and his parents Helen and Paul at such an incredibly difficult time.
In order to show my support and to try and help raise funds and the profile of this amazing charity, I ran a number of events in 2017 & 2018
Firstly, I took on the inaugural Wirral Way Half Marathon on 8th January 2017.
28th May 2017 saw me run my first MARATHON and later in 2017 I ran the Whistle Stop Tour of Wirral.
2018 saw me complete the full 52 miles of the Tour of Merseyside & the Whistle Stop Tour again.
2019 - and I’m running the London Marathon!
To show where your money is going;
Provides a newly diagnosed family with an information pack and telephone/email support
Funds a sensory toy pack and bubble tube
Funds an apnea monitor which alerts parents/carers if the child stops breathing
Funds a home visit to a newly diagnosed family anywhere in the UK
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
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.
Funds a Pulse Oxymeter
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 - savings time and cutting costs for the charity.
Thank you x