Sotos Syndrome Australasia Association

28/07/2026

One question we’re often asked is where families can find reliable, evidence-based information to support day-to-day life.

While you won’t currently find information specifically about Sotos syndrome on the Raising Children Network, there is a wealth of practical guidance for families raising children with disability. Topics include child development, behaviour, therapies, family wellbeing and navigating supports.

We’ve also reached out to the Raising Children Network to advocate for the inclusion of Sotos syndrome in their resources. We know how important it is for families to see rare conditions represented, and we’ll keep advocating for greater awareness and access to quality information.

In the meantime, if you’re looking for trusted, evidence-based information, it’s a resource well worth bookmarking:

https://raisingchildren.net.au/disability

20/07/2026

💜 Your story matters. 💜

One of the greatest privileges of joining the Sotos Syndrome Australasia Board is getting to know the incredible individuals and families who make up our community.

Every person with Sotos syndrome has their own unique personality, strengths, interests and journey, and we’d love to help celebrate that.

Whether you’d like to introduce yourself, tell us about your child, share a favourite photo, or celebrate a milestone - we’d love to hear your story.

There are no rules. Big or small, every story matters.

If you’re happy for us to feature your story on our social media, please send it to [email protected] along with any photos you’d like to include.

We can’t wait to get to know you and celebrate the amazing people who make our community so special. 💜

15/07/2026

✨ Strengths matter. Interests matter.

Every person has strengths. Every person has interests. And when we recognise and build on them, we create more meaningful opportunities for learning, participation and confidence.

Many individuals with SOTOS syndrome have deep interests or passions. Rather than seeing these as something to move away from, they can become a powerful pathway into learning.

The image below is a simple example of an interest-based checklist created for a Year 4 student to support story writing. By weaving the student’s interests into the task, writing became more engaging, motivating and meaningful.

It doesn’t need to be complicated. Small adjustments that reflect a person’s strengths and interests can make a big difference.

💙 We’d love to hear from our community.

What is your child, or your own, favourite interest right now? Tell us in the comments below! 👇

Image description: A Paw Patrol example of an interest-based checklist designed to support a Year 4 student with story writing. The checklist demonstrates how a child’s personal interests can be incorporated into a learning task to increase engagement, motivation and participation. It highlights a strengths-based approach that can be adapted for many different learners and activities

09/07/2026

🌈 Disability Pride Month

This July, we join communities around the world in recognising Disability Pride Month.

Disability Pride is an opportunity to celebrate the diversity of the disability community, challenge ableism, and promote a world where disabled people are valued, respected and truly belong.

The Disability Pride Flag reflects the diversity of our community:

❤️ Red – Physical disabilities
💛 Gold – Neurodiversity, cognitive and intellectual disabilities
🤍 White – Invisible and undiagnosed disabilities
💙 Blue – Psychiatric, emotional and mental health disabilities
💚 Green – Sensory disabilities
⚫ Charcoal background – Honours disabled people lost to ableist violence, neglect and injustice, while representing resilience, solidarity and the ongoing pursuit of equity.

At Sotos Syndrome Australasia, we’re proud to stand alongside the disability community in celebrating the strengths, identities and experiences of people with Sotos syndrome and their families.

Whether you’re proudly embracing disability as part of your identity, supporting someone you love, or continuing to learn, we hope this month encourages understanding, connection and belonging for everyone.

Happy Disability Pride Month. 🌈

Image description: A graphic celebrating Disability Pride Month featuring the Disability Pride Flag with diagonal stripes in muted red, gold, white, blue and green on a charcoal background. The heading reads “Disability Pride Month” with the message: “Celebrating the disability community. Challenging ableism. Promoting belonging.” At the bottom of the graphic are the words “Pride”, “Identity” and “Belonging” displayed on white text panels against a warm gold background.

07/07/2026

🩵 Resource Alert: My Sotos Story 📚

We’re excited to share My Sotos Story, a beautifully illustrated storybook created to help children and families understand Sotos syndrome in an accessible, positive, and child-friendly way.

Through colourful illustrations and gentle rhymes, the book explores genes, growth, identity, and what it means to live with Sotos syndrome, helping children learn about themselves and celebrate what makes them unique.

Resources like this can be powerful tools for starting conversations, building self-understanding, and supporting siblings, classmates, and extended family members to learn alongside us.

Have you read My Sotos Story with your child yet? We’d love to hear your thoughts in the comments. 💙

📖 Available through the Child Growth Foundation.

Image description: Promotional image for the children’s book My Sotos Story. The cover features diverse illustrated children and families alongside DNA motifs and bright, colourful artwork. Large text reads “My Sotos Story” with a banner at the bottom saying “OUT NOW!”. The book is available through the Child Growth Foundation.

‘Your genes are like instructions that tell your body what to do. They set your height, what you look like – all the things that make you, you.’ With bright, colourful illustrations and fun rhymes, My Sotos Story is a book for children, families and anyone who wants to learn about the genetic ...

02/07/2026

Have a question about SOTOS syndrome?

Whether you’re a parent, caregiver, individual with SOTOS syndrome, or a health professional, there is a dedicated international email support service available to help answer SOTOS-related medical questions.

The service is supported by global experts and can provide reliable information to help guide your understanding and decision-making.

📧 [email protected]

Please note that this service does not replace advice from your treating healthcare team, but it can be a valuable source of information and support. This service is also provided by an independent international team of SOTOS experts. While we are pleased to share this resource with our community. SOTOS Syndrome Australasia does not manage the service or response timeframes.

27/06/2026

💛 As we approach the end of the financial year, we’d love your support.

Sotos Syndrome Australasia is entering an exciting new chapter with a new Board and a renewed focus on strengthening support, connection and information sharing for families across Australasia.

Your donation will help us continue rebuilding, creating resources, connecting families and growing a community where no one feels alone in their Sotos journey.

Thank you for supporting a volunteer-led organisation and for helping shape what comes next.

Donate at sotos.org.au

Image description:A pale green graphic featuring a small yellow calendar icon labelled “EOFY” at the top. Large white text on teal blocks in the centre reads, “DON’T FORGET TO DONATE”. A black downward arrow points to a rounded white button displaying the website address “sotos.org.au”.

23/06/2026

Throwback to some special memories from our Sotos Syndrome Australasia Conference 💚

Bringing together families, carers, individuals living with Sotos Syndrome, and professionals created an incredible opportunity to connect, learn, share experiences, and remind each other that no one walks this journey alone.

Looking back through these photos, we're reminded of the friendships formed, the knowledge shared, and the strength of our community.

📸 Feel free to share any memories you have from the event in the comments—we'd love to hear what stood out to you.

And here's a question for our community...

✨ Would you be keen to see another Sotos Syndrome Australasia Conference in the future?

Let us know below if you'd be interested and what you'd love to see included. 👇

20/06/2026

Meet the Team – Heather Cox

Some of you may already recognise our wonderful Heather.

Heather has been part of the Sotos Syndrome Australasia Board for more than five years and has been a passionate advocate for the Sotos community throughout that time. As a parent of a child with Sotos syndrome, she brings invaluable lived experience, insight and understanding to everything she does.

Over the years, Heather has generously shared her knowledge, supported families, helped strengthen community connections and played an important role in helping SSA grow. Many of you may also remember Heather’s involvement in the 2023 SSA Conference in Perth, which brought families, professionals and community members together from across Australia.

Alongside raising her family, navigating the NDIS, advocating for her daughter and working full-time, Heather continues to dedicate her time and energy to supporting the Sotos community, a contribution we are incredibly grateful for.

We are so fortunate to have Heather’s experience, commitment and heart on our Board, and we look forward to continuing to work alongside her as we strengthen support, awareness and connection for families across Australasia.

18/06/2026

As we begin this next chapter for SSA, we’re excited about the possibilities ahead.

We know there is more we can do to support, connect and empower individuals and families living with Sotos syndrome. While our future priorities will be shaped by our community, one thing is certain: none of it is possible without your support.

Every donation helps SSA continue its work in raising awareness, strengthening community connections, developing resources and advocating for those impacted by Sotos syndrome.

If you’re in a position to give, we would be incredibly grateful for your support this End of Financial Year.

Together, we can continue building a stronger, more connected Sotos community.