An independent community project for SCA12

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: SCA12 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.

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 figure on the medical pages cites its source at the claim, so you can check it without leaving the sentence. The research library states the date it was compiled.
• Research is linked, not paraphrased. We list what has been published and send you to the source; we do not interpret findings for you.
• 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 An empty section is more honest than an out-of-date one.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 SCA12 carry the most weight.

Who is behind Cure SCA12

Cure SCA12 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.

Cure SCA12 is run by people who have SCA12 themselves. Not by clinicians, not by researchers, and not by an organisation working on our behalf — by patients, together with the families living alongside the condition. Everything here is written by people on the receiving end of the diagnosis it describes.

That is the reason the site exists in this shape, and it is also its limitation, so both are worth saying plainly. It means we know which questions actually keep people awake, which explanations are useless, and how it feels to be handed a diagnosis nobody around you has heard of. It also means nothing here is clinically reviewed. We source everything and we send you to the original rather than interpreting it — but we are not doctors, and this site is not a substitute for one.

Working with us

The community is open, and there are two doors into it.

Cure SCA12 is an unincorporated volunteer group based in India, run by people living with SCA12 and their families.

Contact

For corrections, research submissions, community enquiries, or press. We read everything, though as a volunteer project replies are not instant.

info@sca12.org

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.