Brunel Capital Partners supports The Jennifer Trust

The Jennifer Trust provides support and information to individuals and families affected by Spinal Muscular Atrophy (SMA). They also promote research in to the causes, treatments and eventually a cure for the condition.

SMA is an inherited neuromuscular condition that affects nerve cells in the spinal cord called anterior horn cells. Messages from the brain travel down the spinal cord, through the anterior horn cells, then along motor neurons to the muscles telling them to move. In SMA, the anterior horn cells fail to provide an effective link between the brain and the muscles. Messages are blocked or distorted. This causes the muscles to waste away (atrophy). The motor neurons affected in SMA are those which enable walking, crawling, arm and hand movement, head and neck movement and swallowing. The muscles used in breathing can also be affected. The brain and sensory nerves, which allow us to feel sensation such as temperature and touch, are not affected in SMA.

SMA is a relatively rare disease that affects approximately 1 in 6500 babies born. That means about 100 new cases are diagnosed each year. Approximately 1 in 40 of us carry the genetic mutation that causes the condition. There are 4 main types of SMA. Types 1, 2 and 3 appear in childhood. The fourth type affects adults, and is known as Adult Onset SMA. Other rarer forms of SMA include SMA with Respiratory Distress (SMARD), Spinal Bulbar Muscular Atrophy and Distal SMA. SMA types 1, 2 and 3 are termed autosomal recessive. This means that for a baby to be affected, both parents must be carriers of the faulty gene. In these circumstances, there is a 1 in 4 chance in each pregnancy of the baby being affected by SMA. The inheritance pattern of the adult and rarer forms of SMA can be different from the childhood forms.

All types of SMA produce muscle weakness but in varying degrees of severity. Type 1 SMA is the most severe and is usually fatal within two years of birth.

More information about the Jennifer Trust and SMA is available here.

Why the Jennifer Trust?

Archie (7) and Scarlett (5) Parker have grown up with my two eldest sons, Isaac & Jacob. Archie & Scarlett have type 3 SMA after both of their parents, Kevin & Louise carried the genetic mutation that causes the condition. In April, I will be cycling from London to Paris with my friend James Coller. Over 4 days we will cycle over 280 miles. Considering I only took up road cycling in August, this will be a huge challenge. My aim is to raise as much money as possible for the Jennifer Trust and hopefully, my four day effort will help all SMA sufferers and especially Archie and Scarlett.

Over the next six months I will be training hard and posting regular progress reports as I prepare for the event.

I’d be grateful for any support and if you would like to sponsor me, you can do this by visiting my donation page at www.jtsma.org.uk/Damien%20Rylett or by clicking here.

Many thanks

Damien