About our cause
We are inviting you to join us in raising awareness and making a difference in the lives of children affected by SCN2A-related disorders. As parents of children who have SCN2A, we understand the challenges and heartbreak that come with this devastating genetic mutation.
SCN2A is one of the most common causes of neurodevelopment disease, leading to early-onset epileptic encephalopathy, intellectual disability, autism spectrum disorders, and movement disorders. The severity scale for SCN2A can vary significantly, and sadly, our community experiences the loss of a child with SCN2A all too often. With approximately 800 children impacted globally, SCN2A remains a rare condition.
No matter how you choose to get involved, your support is invaluable in changing lives for individuals and families affected by SCN2A. Every action, big or small, brings us one step closer to a future where SCN2A-related disorders are better understood, treated, and where individuals with SCN2A can live better lives.
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DEVASTATING GENETIC MUTATION
What is SCN2A?
SCN2A is one of the leading causes of neurodevelopmental disease worldwide. Early-onset epileptic encephalopathy, intellectual disability, autism spectrum disorders, movement disorders and behaviours are common clinical features of this genetic condition. Sadly, SCN2A-related disorders can vary in severity, and the loss of children is all too familiar to our community. With only approximately 1000 children affected globally, SCN2A remains extremly rare but causes significant impact.
As the lead organisation for families impacted by SCN2A in our region, we are passionately dedicated to creating awareness of this condition and fighting against its devastating impact. Our mission is to bring hope and meaningful change to individuals and families affected by SCN2A by fostering collaborative research, building a strong community, and raising funds to support groundbreaking research and direct family support.
OUR STORIES
How we can help
So initially, Eva's condition was very isolating, and it's very hard to do something as simple as going food shopping when your child's having seizures every 20 minutes. I actually run a property management business, and I continued to run it the entire way through, which was really, really hard.
- Ursula (Parent of Eva)
And it's become clear to us that from visiting the Florey team and the researchers there, that it just comes down to money and the amount of grants they can put towards particular theories and research. So I mean, yeah, the hope is that one day they've spent enough time and had enough money to make a major breakthrough and work out how to solve some of these problems and give someone some quality of life that they would otherwise never have had.
- Justin & Romina (Parents of Aaliyah)
YOUR IMPACT
How you can help
Here are a few ways you can get involved:
- Share our fundraiser on your social media channels
- Send a personal email to your family and friends asking for support
- Set up a fundraiser in your city
- Enter a fitness event and choose SCN2A Australia as your choosen charity
Donate
By making a donation to SCN2A Australia, you can directly support our efforts to fund research, provide support services, and raise awareness about SCN2A-related disorders.
Submit your story
If you or someone you know has been personally affected by SCN2A, sharing your story can create awareness and provide hope to others facing a similar journey.
Spread the word
Utilise your social and personal networks to share information about SCN2A Awareness Day and the fundraising campaign.
Share
WHAT WE DO
About SCN2A Australia
At SCN2A Australia, our mission is clear: to improve the lives of individuals and families affected by SCN2A-related disorders. With your support, we aim to raise awareness, provide essential support, foster groundbreaking research, and advocate for better resources and treatments.
Since our launch in 2019, we have built a strong community both locally and internationally, a vital component in achieving our goal of bringing treatments and cures to our families. There is currently no specific treatment for SCN2A, and old therapies have little or no effect. In order to change this, we believe we need to work closely with researchers and clinicians, and most importantly, our families. By understanding how SCN2A impacts families and advocating for better outcomes, we hope to bring about a better life for each family, no matter where they live.
The Florey Institute – SCN2A team
We are honored to have the support of world-leading researchers who dedicate their time to studying SCN2A. However, research on these conditions can be slow and expensive, and there is little to no funding available from government funding bodies for conditions such as these. In light of this, we are raising funds to support crucial research that will translate learnings into treatments. We also aim to increase public awareness of genetic epilepsies, such as SCN2A, and provide educational and emotional support for parents and families by connecting them to others who share similar experiences.
TOGETHER, WE CAN MAKE A DIFFERENCE
Join us
Join us, as we come together to raise awareness for SCN2A-related disorders. Let us stand united, share our stories, and support SCN2A Australia and SCN2A Asia Pacific in their mission to improve lives and create a brighter future for all those affected by this devastating condition.
A huge thank you for our donors!
Phil Woodbridge
Tyneal Berry
Eva Selorio
Steven Inglis
Suzanne Hibberd
Elf Mason
Ivan Baumgartner
Isabelle Verlaguet
Jesusa Aguilar-Mana
Leah Myers
Sébastien BOUTIN
emmanuelle lo
Denis Mangoenpawiro
Isabelle Montarello
Axel Darjana
Coralie Guepy
Delphine Routhe
Mariola Bouyer
Rouault Moea
Oceane Dorbritz
Together, we can make a difference.
No matter how you choose to get involved, your support is invaluable in changing lives for individuals and families affected by SCN2A. Every action, big or small, brings us one step closer to a future where SCN2A-related disorders are better understood, treated, and where individuals with SCN2A can live better lives.
For more information about the campaign, please contact us.
