Supporting SCN2A Asia-Pacific
SCN2a is one of the most common causes of neurodevelopment disease. Common clinical features include early-onset epileptic encephalopathy, intellectual disability, autism spectrum disorders and behaviours, and movement disorders. The severity scale for SCN2A can vary significantly and unfortunately our community experiences the loss of a child with SCN2A too often. SCN2A remains rare with approximately 800 children impacted globally.
SCN2A Asia Pacific is the key organisation for families impacted by SCN2A in our region. Since launching in 2019 we have built a strong community both locally and internationally. This is key for our mission to bring treatment and cures to our families. There is currently no specific treatment for SCN2A with many old therapies have little or no treatment. In order to change this we need to work closely with researchers, clinicians, industry and most importantly our families. We need to understand how having SCN2A impacts their family, what support is needed and how can we advocate to better improve outcomes for each family, no matter where they live.
We are grateful to have world leading researchers leading the way in SCN2A however as our understanding of the disease grows we still remain without treatments for our children. To this end, we are raising funds to support important work which will translate research learnings into treatments. We also aim to increase public awareness about the severity and prevalence of genetic epilepsies such as SCN2a and provide educational and emotional support for parents and families by connecting them with other families.
We need to work with urgency towards a CURE for our children – we are grateful for your support.
All money that is raised via this account will be donated to SCN2a research via the Genetic Epilepsy Research Fund or to directly support families here in Australia.
Donations received are receipted and held in trust by the Epilepsy Foundation.
Join us to support families in our region by making a donation. All funds raised go back into support, awareness and research.
SCN2A Asia Pacific Mission:
WORK LOCALLY, CONNECT GLOBALLY.
- Connect Australian families and provide information and resources
- Link with and work directly with SCN2A researchers, clinicians and professional bodies.
- Work with industry around the globe to ensure families have access to research projects, clinical trials and any potential treatments.
- Work with other SCN2A bodies to co-ordinate activities world wide, including awareness raising.
- Raise awareness of SCN2A in Asia Pacific both with the public and health professionals
- Promote fundraising for SCN2A in Asia Pacific
- Work with relevant government departments and rare disease entities ensuring our work aligns with providing access to treatments when they become available.
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