Joe has Coffin-Siris Syndrome due a change in his ARID1B gene. As you all know this has resulted in him having complex needs. We are very excited to be part of a group of families who are raising money for FAR. Despite there currently being no treatment currently due to incredible advancements in clinical genetics and the initial work of the foundation we now know that there could be.

You can read about the amazing work the foundation has done so far and the real prospect of a treatment for our children here:

https://www.arid1b.org/

Over 6 weeks in the summer holidays Joe will be raising money doing what he does best and completing his own triathlon. He will be:

Swimming (independently!) - 1 mile

Walking - 2 miles

Horse Riding - 3 miles

I will keep you all updated with his progress towards all his targets. We need to help towards raising £150,000 for the initial stages of the research. We will be very grateful for all donations. Please also gift aid if you are a UK tax payer.