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My name is Bear and I am 10 years old.  I am going to run (cross-country) and row (indoor) the distance of 163km from Sandroyd School to Big Ben over 24 days of  the Christmas holidays starting on Saturday 11th December and finishing on Bank Holiday Monday - 3rd January.

My friend Anouk suffers from SMA and I want to help raise funds for the research into her condition.

ACE SMA is raising awareness and research into Spinal Muscular Atrophy (SMA)

SMA is a rare, genetically inherited neuromuscular condition. It is caused by a mutation in a gene called the survival motor neuron 1 (SMN) protein. The loss of this survival motor neuron causes cells in the spinal cord called motor neurons to die. Over time, the breakdown of these neurons leads to a gradual decline in muscle size and strength. The symptoms of SMA can vary depending on age and disease severity – but they usually include muscle weakness, delayed gross motor skills and difficulty with crawling and walking breathing and swallowing are also affected. 

Currently physiotherapy is not provided on a regular basis by the NHS, and that the parents of these children assume responsibility for the greater amount of physiotherapy rehabilitation themselves. ACE SMA believes it is important to try and reduce this daily burden on parents and shift their role away from full-time care in order to allow for more balanced parental responsibilities.

Once a motor neuron is lost there is no way of retrieving it – using muscles and keeping motor neurons active is essential for SMA sufferers to maintain their strength, mobility and independence. Nusinersen (the current UK drug used to treat SMA) slows down the loss of these motor neurons, ACE SMA would like to prove that through regular and tailored physio this loss can be slowed down even more. 

ACE SMA’s first project is in partnership with Oxford University. It is being overseen and delivered by Professor Laurent Servais and his team. Prof. Servais is a Professor of Paediatric Neuromuscular Diseases, he has been involved in numerous clinical trials, and is the leader of the newborn screening program for SMA in the UK. 

This is a two-year project, that aims to gather enough evidence to prove the need for physio, and hopefully create long term change in the way it is funded and provided for by the NHS. This will be a pilot that if successful will be rolled out across the whole country.

For more information please visit the website www.acesma.co.uk

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