Inspiring documentary made for Fresh Film Festival 2013
A short documentary has been made for Fresh Film Festival 2013 after winning a Co-Operative Cymru Shorts film competition.
It shows the journey of Charlie receiving a kidney from his father to save his life, despite his ever decreasing health beforehand we see the lively, happy little boy that makes everybody smile. He remained cheerful and positive throughout his stay in hospital, despite the serious nature of the operation he had just received.
Genetic Disorders UK to sponsor creche at 2013 conference
We are delighted to announce that Genetic Disorders UK will be sponsoring the creche at our 2013 conference in Birmingham. The foundation will receive a grant of £4,500 from Genetic Disorders UK, the national charity that organizes Jeans for Genes Day.
Jeans for Genes Day raises money for Genetic Disorders UK. Genetic Disorders UK provides much needed advice and support for individuals and families affected by genetic disorders www.geneticdisordersuk.org.
Inquiry into Sussex Police restraint of disabled child
SMS Foundation UK - Press Statement
The Smith-Magenis UK Foundation is aware of the situation being reported in West Sussex. It is inappropriate for us to comment on specific cases, especially where complaints have been made and investigations are underway.
Smith-Magenis Syndrome is a very complex and demanding genetic condition. Inherent in the symptoms are behavioural challenges, self-injurious behaviours, impulsivity, and destruction of items. A considerable amount of effort is made by parents and carers to minimise these through behaviour management strategies, medication, and as a last resort, physical intervention. All of this has been derived through extensive research into this syndrome. The methods and responses used should be appropriate to protect the child, parents and carers and anyone or anything in the immediate vicinity.
The lack of understanding and training in conditions such as Smith-Magenis Syndrome can lead to people entering from outside the person’s network to respond with more extreme methods of restraint during incidents of challenging behaviour than are actually required. Whilst we cannot offer an opinion to the appropriateness or otherwise of the police action taken in this case, we hope that there will be lessons learnt from the investigation that is underway that will help improve incident management involving all vulnerable children and adults including those exhibiting challenging behaviours.