Joanne, Leigh and Louis Reeson's Mad March Mare page

Joanne Reeson is raising money for Alex, The Leukodystrophy Charity
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Mad March Mare · 7 March 2015

Alex, The Leukodystrophy Charity (Alex TLC) was founded in 2004 by a mother whose two sons had been diagnosed with leukodystrophy. She recognised the severe lack of information and support available and wanted to make sure that no one had to face leukodystrophy alone.

Story

ALD Life is a registered charity (no 1106008).  We aim to raise awareness and funds for research.  The disease affects young boys who often die at a very young age.  Only around 200 people in the UK are affected by this condition and the mortality rate is around 30%.  The remainder are likely to suffer severe mobility problems or for boys it will be that they can only communicate through nodding and are wheelchair bound etc.

There is currently no cure and while there are small activities under way it is a constant battle to secure funds.  The main reason is that while the impact of the problem is massive, the numbers are small which means it cannot compete with bigger higher profile diseases in getting the Government or drug companies to invest in research and development.  Our charity are leading the way in terms of supporting patients and carers but keen to take ourselves to the next level of being able to actually fund research and hopefully you can help.

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Donation summary

Total
£580.00
+ £143.75 Gift Aid
Online
£580.00
Offline
£0.00

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