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Camps & Conferences

As SMS is a rare neurodevelopmental disorder which includes intellectual disability, communication impairment, sleep disturbances and significant behavioural challenges; early diagnosis and a comprehensive approach involving behavioural therapies, educational support, and addressing sleep issues are crucial for managing SMS. While the syndrome poses unique challenges, individuals with SMS can lead fulfilling lives with proper care and support. Though clinically well-defined, limited awareness of SMS often delays accurate diagnosis to early school age.  Even once diagnosed, families of individuals with SMS often feel alone and seek to connect with other families impacted by this rare syndrome and with experts who can advise on proactive management strategies.

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In 2003, a unique Camp experience was established, bringing together Australian families of children with SMS, clinicians/researchers from the United States, led by Prof. Ann C.M. Smith, MA, DSc(Hon), the co-discoverer of SMS. With 10 biennial camps since 2003 and being the first and only program of its type in the world, the Australian SMS Camp program aims to celebrate the achievements of all individuals diagnosed with SMS and give children and families a chance to mix with others who have shared lived experiences. The most recent camp was held in November 2024 at Camp Manyung, Victoria. It was coordinated in partnership with Disability Sport and Recreation.

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The camp affords an opportunity for families from all over Australia to bond and network, gain necessary respite, hear the latest research from Prof. Ann Smith, attend informative presentations and participate in interactive panel discussions with clinicians and other experts. For those who are unable to attend the full onsite camp experience, the blended and proven camp-conference model provides flexible ‘day visitor’ and online options to maximise the camp’s value to our SMS community.  Over the years, in addition to family guests, the camp has welcomed educators, medical professionals, allied health specialists and support service providers who also benefit from interaction with the broader SMS community – gaining invaluable insights into SMS.

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In 2024, we held the following sessions:

  • Newly Diagnosed / New Family Information Briefing

  • SMS Research Update

  • SMS Australia Community Briefing

  • Expert Q&A Clinician Panel, including topics relating to…

    • Medical management and preventative health

    • Evidence-based interventions for SMS

    • Pharmacogenomics and SMS

    • Supporting optimal mitochondrial function

    • Successful behaviour management & habit reversal

    • Road to success with SMS in an educational setting

    • Promoting physical health, fitness and benefits of recreational sport

  • 'InPlace Living' Supported Disability Accommodation education session

  • Parent/Carer facilitated roundtable sharing session (e.g. tips and tricks)

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Our next SMS Australia Camp will return to Camp Manyung in Mount Eliza, Victoria, and will be held Friday 6th - Sunday 8th November 2026. 

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