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334 %
raised of £1,000 target
by 137 supporters
Rob Hillock avatar
Rob Hillock

Running in 2017 and 2018 for ACT for SMA

Fundraising for ACT for SMA

334 %
raised of £1,000 target
by 137 supporters
  • Event: Wirral Way Half Marathon, 08 Jan 2017


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


Thanks for taking the time to visit my JustGiving page.

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 is not good.

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 this incredibly difficult time.

In order to show my support and to try and help raise funds and the profile of this amazing charity, I'm aiming to run a number of events in 2017.

Firstly, I'll be taking part in the inaugural Wirral Way Half Marathon on 8th January 2017.

28th May will see me run my first MARATHON!

Later in the year (September) I'm running the Whistle Stop Tour of Wirral.

More events to follow....

I appreciate it's an expensive time of year but even the smallest donation will help.

To show where your money is going;

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

£ 75
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


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