As most of you know - following being diagnosed with a rare genetic condition a few years ago, my wife Danielle and I started a charity called  The Sandcastle Trust to help other families in similar situations. 

I've decided to risk life and (not fully functioning) limbs, to take part in this year's Dragon Boat Challenge on the Thames with a team of 20 friends and family on 22nd July to raise much needed funds. I have signed a 'Disabled Persons Waiver Form,' been assigned a buddy to prevent me drowning and have been training hard - mainly to lose weight so I am easier to drag out of the water.  

Our team would really appreciate any donations. Thank you for your support.

The Sandcastle Trust is a small charity with a big vision:  A future where a diagnosis of a rare genetic condition will not be a barrier to experiencing everything that life has to offer – most importantly enjoying time together as a family.

How you can help

Please donate and help us to support those who have been diagnosed by some of the rarest genetic conditions in the world.

The physical, emotional and financial strain of living with a rare genetic condition can often tear families apart.  All money raised will go directly towards providing some much needed fun and respite for affected families.