Popular questions
Frequently asked questions
Answers to some of the questions we hear most often. Can't find what you're looking for? Ask us.
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I've just received an STXBP1 diagnosis. Where do I start?
Start with our Newly Diagnosed page. It's a warm welcome to families and care providers, with the top ways to connect with the community and get involved straight away. You are not alone — your family is now part of a loving and supportive community of parents raising remarkable children. -
How do I join the mailing list?
Email us at stxbp1australia@gmail.com to join our mailing list. This is the best way to stay current with all news from the Foundation, including current research and clinical trial opportunities. -
How big is the STXBP1 community in Australia?
The STXBP1 community in Australia numbers just over 30 families, and we are part of a much larger global community of over 1,000 families — with numbers growing every year as genetic testing becomes more available. In Australia, our STX'ers range in age from little bubs right through to young adults. -
Are there support groups I can join?
Yes. There are several Facebook groups that are safe places to connect with other parents and care providers. You'll find the full list, along with global research links, on our Resources page. -
Is there research happening, and can my family take part?
There is research underway globally that gives us all so much hope, spearheaded by the US STXBP1 Foundation, and STXBP1 Australia is working to fund Australian-based research. Families can take part in a natural history study by completing surveys and interviews — find out more at stxbp1disorders.org/clinicaltrialsandresearch. You can also read our Key Publications and Research pages. -
How can I help or get involved?
There are so many ways to help — connecting with other families in your state, assisting the Foundation, donating, fundraising, writing a blog post, or amplifying our messages on social media. Every contribution makes a big difference in helping to find a cure. See Newly Diagnosed for the top ways to get started, or contact us.
We're expanding our FAQ. If your question isn't answered here, please get in touch — we're always happy to help and your question may help other families too.