<p>On April 22nd I'm running the Virgin London Marathon in aid of ASSERT (Angelman Syndrome Support Education and Research Trust). ASSERT is a United Kingdom based group who support families and carers of children and adults with Angelman Syndrome through difficult times especially at the time of diagnosis. ASSERT holds a very successful biannual conference, this is heavily subsidised by the charity which is totally reliant on donations and 100% of donations benefits families .The majority of the trustees are parents or relatives of children or adults with Angelman Syndrome. I heard about ASSERT because my soon to be brother in law, Matthew has this syndrome.</p> <p><strong>Angelman Syndrome</strong> is a rare genetic condition first identified in 1965 by a British doctor, Harry Angelman, from whom it also gained its name.</p> <p>The syndrome - originally called 'Happy Puppet Syndrome' because of the characteristic happy demeanour and stiff jerky movements of the children - was renamed Angelman Syndrome in 1982. Although at first little was known and indeed few other cases identified, in recent years much more has been learned. During the 1980's advances in genetic medicine made it possible to diagnose increasing numbers of cases and also to start identifying the cause.</p> <p>In simple terms, it is a chromosome disorder that causes severe learning difficulties. It is now known that irregularities in Chromosome 15 are responsible for AS. However it is also known that there are several different irregularities that can occur in Chromosome 15, all of which result in a diagnosis of AS.</p> <p>Angelman Syndrome is not a disease, it is a neurological disorder that causes severe learning difficulties, and although those affected have a normal life expectancy, they will require looking after throughout their lives. It's possible to go from knowing nothing about AS, to being overwhelmed by the information now available to families of those newly diagnosed with AS. It can be very difficult to understand all there is to know about AS very quickly. That is why ASSERT is so important so that families are not overwhelmed.</p>