Hi friends and colleagues I am running the Paddock Wood half marathon on Sunday 12th March to help raise funds towards a life saving treatment for my grandson Leo's genetic condition.

Leo was born in March 2021 with an unforeseen ultra rare genetic disorder that only effect 35 children worldwide. Leo is currently one of five in the UK with this life limiting diagnosis. This TBCD mutation effect the patients brain, central nervous system and muscles. As a result Leo has epileptic seizures and low muscle tone, which means he has difficulty moving and breathing. 

We have a biotech company in California called Rarebase that have research underway. Their two approaches are drug discovery and cell based disease models. Drug discovery - This means researching every FDA approved drug that currently exist for unrelated conditions to test if one or more of these drugs can be repurposed to treat the TBCD gene mutation.Cell based disease models - creating cell models direct from Leo's blood samples to test against therapeutic approaches such as increasing the TBCD gene expression. By getting Leo’s functioning TBCD gene copy to compensate for the dysfunctional copy.

This is life changing research and could mean Leo will no longer be dependant on a breathing machine over night and will learn to walk and talk. All funded research on the TBCD gene could help change the course of Leo's and all of the TBCD children's unknown future.

If you would like more information please check out Leo’s website www.aLifeForLeo.com or if you would like to get involved in future events, create you own event for the TBCD cause please let me know. Any support or fundraising advice would be sincerely appreciated by the Andrews family. 

Thank you!

Kevin

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