I am a parent of a child with Schinzel Giedion Syndrome (SGS), a rare neurodevelopmental disorder which causes severe epilepsy, neurodevelopmental delay and increased risk of cancer. Sadly, SGS is a life-limiting disease. Most children with SGS die before their 5th birthday. My daughter Ophelia is now almost 8 years old and exceeding all of her doctor's expectations in terms of her progress and prognosis.Inspired by Ophelia's love of life, I am setting up a patient organisation for SGS to represent the international SGS community, as nothing currently exists. We are in the process of registering as a charity which will be called the Schinzel-Giedion Syndrome Foundation. Although SGS is a rare disease, more children are being diagnosed with this condition every month now that genetic testing is becoming more widely available and affordable. These families, understandably devastated by the diagnosis, need to be able to easily find our organisation and be able to access valuable resources, information and support through our website, to find hope and to feel part of the global SGS community. Our charity will raise awareness of SGS in the scientific and medical community to improve recognition and diagnosis of the disease. Our charity will encourage and facilitate research into SGS to enable us to better understand the condition and therefore help establish better treatments and maybe even a cure one day.Our charity will provide affected families with easily accessible scientific information about SGS and ongoing research in the field, curated in such a way that it can be understood by non-scientific persons, so that parents can feel empowered. Our charity will provide support to affected families such as grants for equipment and respite care, as well as bereavement / grief counselling.Our charity will fundraise to support these research and support initiatives for affected families.