Spinal Muscular Atrophy or SMA for short, is a neuro muscular disorder that affects the nerve cells that control voluntary muscle movements. Over time people with SMA lose motor neurons specifically in the spinal cord resulting in severe and progressive muscle atrophy and weakness.

Fortunately, there are pioneering treatments now available through the wonderful NHS including Nusinersen and Risdaplam. Both treatments aim to improve the ability for the body’s nerve cells to transfer signals from the brain to the muscles. People who have engaged with the treatments have seen significant improvement with their motor movements. Unfortunately, in some cases not everyone in the UK has access to these life changing treatments.

With 1 in 40 of us carrying the gene that causes SMA and in the UK, approximately 75 children are born with SMA each year, the charity Spinal Muscular Atrophy UK provides information and support to anyone affected by the disorder and acts as an advocate for the access to treatments and are committed to help fund and facilitate research.

Our twins, Finn and Zara were diagnosed with Spinal Muscular Atrophy type 2 in July and then September 2019 (Zara being September). Although they have the same condition genetically, they present physically in different ways. Zara is ambulant but only for short distances. Finn can now crawl, and pull himself up to stand however predominantly uses a wheelchair to mobilise. Finn is also currently going through an autistic assessment as he has social communication difficulties and speech delay.

This year we have set ourselves two goals with the aim to raise funds to support both SMA UK and to buy new equipment for the sensory room at Juniper Green Primary School. Finn is a regular user of the sensory room when at nursery and benefits hugely from his time there. This room will, and currently does also benefit other children in the school. Although the sensory room does have appropriate equipment already in place we would like to add other pieces of sensory equipment including different textured floorings, mirrors and bubble tubes. We will work closely with Juniper Green Primary to ensure we purchase the right things for this room.

Firstly Becky will be hosting a prosecco night and raffle on Saturday 30th July at Juniper Green village hall for 100 guests with the aim to raise over £1500. If you would like to donate a raffle prize that would also be fantastic!

Giles on the other hand will be cycling over 1000 miles over 10 days in the well-established Lands End to John O’Groats route between 1st -10th September. As you can imagine the tough route will take in some of the UK’s finest countryside however will accumulate over 57,000ft of climbing. As you can imagine Giles has been training for this event and you can keep track of how this is going through his Strava account. https://www.strava.com/athletes/2096853

He will be arriving into Juniper Green on Wednesday 7th September, after 7 days of riding, where he will be greeted by pupils and parents. On the same day the school will also fundraise whilst raising awareness for the causes. You will be able to follow his live progress through Garmin (link to follow).

We really hope that you can support our causes which will make a huge difference to a lot of people.

Thanks

Giles & Becky

PS: A big thanks to Chris at Venture Studio for taking the cover photo for us.