News - RESEARCH

Here are the latest news stories from Alex TLC and about topics we think you'll find useful.

SwanBio: AMN Press Release

June 2022

SwanBio Presents Design of Innovative Natural History Study Aimed to Evolve Understanding of Adrenomyeloneuropathy and Inform Future Treatments SwanBio have released a press release about their AMN natural history study using wearable technology – with the data collected to provide insights for future first-in-human study of SBT101, AAV-based gene therapy for AMN.

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6 simple questions on reforming SEND services

June 2022

#SENDABetterMessage campaign The government is looking to reform disabled children’s services through a set of proposed policies in the ‘SEND Green Paper’. The government’s plans contain several worrying proposals that could further weaken the rights of families with disabled children and make it even harder for them to access support.

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Families needed for risk-feeding study

June 2022

Are you a family member, carer or guardian of a child (under the age of 16 who is currently risk feeding or has risk fed in the past? Do you have experience with risk-feeding discussions and decisions with medical professionals?  Risk feeding (also sometimes known as comfort feeding or eating and drinking with acknowledged risk), is when a child eats and drinks with the knowledge that they risk choking or aspirating when doing so. Currently decisions in this area do not follow a protocol, which affects standardisation of practice. To resolve this issue, we are looking for family members, carers or guardians with experience of being involved in paediatric risk-feeding decisions and discussions with children under the age of 16 to take part in a focus group on Zoom.

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