One of our good friend's daughters Daphne, ( Rob's niece ) was diagnosed with CLCN4 a rare genetic disorder associated with intellectual disability and speech delay. There is no known cure, and little known about what happens to the brain when this 'channel' fails to work properly. The charity, CLCN4 has the goal of raising awareness, advancing research and providing care to children diagnosed with the condition. The message is one of hope, determination that doctors will one day be able to have an entirely different conversation with a newly diagnosed family.                            There has been very little limited research into the condition, but with many thousands of individuals suffering worldwide from its effects. As well as raising funding for charity, we are also keen to raise awareness of CLCN4. Any support would be very gratefully received