I'm doing a 29km charity walk on 26th June to raise money for Spinal Muscular Atrophy (SMA) which is a genetic condition that affects my 3 year old niece, Anouk.

The charity I'm walking for is called ACE SMA which was recently set up by my brother and sister in law, Mike and Sophie. Its focus is to raise awareness of Spinal Muscular Atrophy and fund clinical research with the University of Oxford to prove the advanced benefits of bespoke and regular physiotherapy for children with SMA and utltimately help them live fun and active lives.

You can read a bit more about SMA and the charity below. I'd very much appreciate any donation to help this cause (and incentive to get my very unfit self round the 29km route)!

With many, many thanks, 

Claire x

More about SMA and the ACE SMA charity:

SMA is a genetically inherited neuromuscular condition (It is known as the child form of Motor Neurons Disease). Although it is classed as a rare disease it is one of the most common rare diseases. This in turn means that (thankfully) there has been a lot of research into treatments. Currently there are 3 approved treatments available in the world, they are however also the world’s most expensive drugs. Despite being the most common genetic cause of death in children under 2 years old, the disease is still relatively unknown. We want to support new research and trials, raise the profile of SMA in the UK, and allow more money to be invested into research and technology, ultimately improving the lives of those living with the condition. Our principle target is to enable children to have as much mobility and free movement as they can, something most of us take for granted. Although the amazing treatments are doing incredible things to prevent regression, we think that the effects could be enhanced by combining them with regular and tailored physiotherapy.