Community calls
Video calls with others affected
Informal video calls for people living with SCA-12 and the families supporting them. No agenda beyond talking to people who get it.
Community
Nobody should have to work this out alone
SCA-12 is rare, which means most people affected by it have never met anyone else who has it. Changing that is the point of this page.
What the community offers
Connection, in a few different shapes
Different people need different things — sometimes practical answers, sometimes just the relief of talking to someone who already understands.
Shared stories
Experiences in people’s own words
First-hand accounts of diagnosis, adaptation, and daily life. Reading someone else describe your own experience can be quietly powerful.
Updates
Research and community news
When something meaningful is published or a call is arranged, community members hear about it directly rather than having to check back.
Upcoming
Community calls and events
No community calls are scheduled just yet
We would rather show you nothing than show you something out of date. Community members are told first when a call is arranged — joining is the way to hear about the next one.
Contribute
Ways to help build this
Cure SCA-12 is early, and small contributions genuinely change what it can offer the next family who finds it.
Share your story
Tell us what your diagnosis and daily life have actually been like. You choose how much is published, whether your name appears, and you can withdraw it at any time.
Get in touchCorrect something
If anything on this site is inaccurate, out of date, or unclear, we want to know. Corrections from people living with SCA-12 carry particular weight.
Report an issueHelp others find us
Most people discover a rare-disease community through another person. Passing this on to someone who needs it is the most useful thing you can do.
About the projectCome and find us
Join the SCA-12 community
One short form. You will hear about community calls, new research, and ways to get involved.