An independent community project for SCA-12

Our mission

To make Spinocerebellar Ataxia Type 12 less isolating and less confusing: to gather accurate, readable information in one place, to connect the families living with it, and to help the community follow and support research that could change its future.

We are deliberately narrow. There are excellent organisations covering ataxia broadly, and we link to them rather than duplicating them. Our focus is the specific gap: SCA-12 itself.

What we do — and what we deliberately don't

Being explicit about the boundaries matters more for a health site than almost anything else, so here they are.

We do: publish plain-language explanations of SCA-12; maintain a library of published research with links to the original sources; connect people affected by SCA-12 with each other; and point to established organisations for specialist support.

We do not: give medical advice; recommend or evaluate treatments; run a clinician or clinic directory; offer referrals; sell anything; or publish research findings we cannot link to a source. If we cannot verify something, we leave it out and say the section is incomplete.

How we handle information

Everything on the medical pages of this site follows the same rules:

• Every information page carries a last reviewed date and states where its content came from.
• Research is linked, not paraphrased. We summarise a paper in one sentence and send you to the publisher.
• We remove content rather than let it go stale. An empty section is more honest than an out-of-date one.
• Anything we have not verified is marked as unverified or omitted, never presented as settled.
• Corrections are welcomed and acted on. Reports from people living with SCA-12 carry the most weight.

Who is behind Cure SCA-12

Cure SCA-12 is an independent, volunteer-run project. It is not affiliated with any hospital, university, pharmaceutical company, or government body, and no clinician or researcher named anywhere on this site is responsible for its content.

Funding and legal status

Contact

Email info@sca12.org for corrections, research submissions, community enquiries, or press. We read everything, though as a volunteer project replies are not instant.

For anything urgent or medical, please contact your own clinician or your local emergency service. We are not able to help with individual medical situations.