Episode 2: Sleep Challenges in Children with Rare Syndromes: A Family Perspective

In our second episode, we return to the University of Birmingham’s sleep research to explore the sleep issues experienced by children with rare genetic syndromes and their families.Dr Marie Dunnion is joined by Dr Rory O’Sullivan and parent carer, Leeann Stevenson. Leeann is a parent carer of a child with Smith-Magenis Syndrome (SMS) and also Executive Director of the Smith Magenis Syndrome Foundation. She shares what it can be like when a child has severe sleep difficulties and the strategies that helped her family manage these challenges.See below for links to resources, charities, support services, and related research:Resources Cerebra: Get Your FREE Sleep Tips BookletCerebra: Sleep Advice Service Cerebra: Sleep - A Guide for ParentsCerebra: Sleep CardsCerebra Charity Website – the national charity dedicated to helping children with brain conditions and their families discover a better life together.My Communication Passport – a practical and person-centred way of supporting children, young people and adults who cannot easily speak for themselves. Charities and Support ServicesContact: the charity for families with disabled childrenMencapScope | Disability charity UKSMS Foundation UK: supporting SMS families for a positive future SMS Foundation UK: join our Community – join to become a family, or professional, member of The SMS Foundation UK.SWAN UK (Syndromes Without A Name) - Genetic AllianceUnique | Understanding Rare Chromosome and Gene Disorders Facebook PagesSmith-Magenis Syndrome Foundation UK Facebook PageCerebra Network Facebook Page                          ResearchCaregivers’ experience of sleep management in Smith–Magenis syndrome: a mixed-methods studyRESEARCH | Cerebra Network – there are a number of projects happening across the network.The developmental trajectory of sleep in children with Smith-Magenis syndrome compared to typically developing peers: a 3-year follow-up studyFor any enquiries, please complete the contact form on our website: CONTACT | Cerebra Network