Family Engagement
At the Synapse Centre it is extremely important to us that we provide an approachable service and involve families as much as possible in the development of our research, from study design to dissemination of our findings.
It is also one of the Synapse Centre’s aims to highlight the realities of caring for a child with a neurodisability that the public may not be aware of. Many children with a neurodevelopmental condition are placed under an umbrella diagnosis that varies considerably in level of severity from one family to the next. Inevitably those with the severest form of disability are a hidden population. We want to ensure everyone has a voice and shine a light on neurodisability and the lifelong impact for these children and their families.
Moreover, it is these most vulnerable and complex children whose needs may therefore unfortunately not be met by standard care pathways. Most children severely affected by their condition will have co-morbidities (simultaneous medical problems), requiring additional intervention.
While the diagnostic process is of great importance, we are acutely aware of the importance of continuing support for children with complex needs and therefore the fundamental importance of research in enabling this process.
With this in mind, we would like to invite families and individuals to become ‘Synapse Superstars’ and relay their experiences of living with a neurodisability. We would like to discuss topics such as:
- What direction you would like research to go in?
- The impact of receiving a diagnosis of a neurodisability on you and your family.
- What continuing care you have received.
- The highs and lows of the reality of living with a neurodevelopmental disorder.
If you would like to nominate a Synapse Superstar and tell your family’s story to raise much needed awareness please click on the link below.
NOMINATE A CHILD
To nominate your child or a child you know to become a Synapse Superstar