Day-to-day care
The practical questions a clinic visit never has time for: physiotherapy that helped, adaptations at home, managing tremor through a working day, what to ask for and how to ask.
Community
Nobody should face SCA12 alone
Around a hundred people and families are in our registry, most of them in North India, and doctors and researchers who work on SCA12 are in the group too. This page says what joining actually involves and what happens next.
~100
people and families in the registry
North India
where most members are
English
the language the group runs in
Doctors & researchers
are members too
What happens when you join
Four steps, and none of them a void
People are rightly wary of handing details to a form and hearing nothing back. This is what actually happens.
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Fill in the registry form
It is a patient registry, not a mailing list: it asks for the patient’s name, contact details, family history, CAG repeat result, symptoms and medication. You agree to our registry terms with one tick at the start. If you are filling it in for someone else, make sure they agree.
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Someone from the team contacts you
A person, not an automatic reply — one of us, who has SCA12 or lives alongside it. This is where you say what you are looking for.
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You are added to the WhatsApp group
Where the day-to-day conversation happens: practical questions, what has worked for other people, and company from people who understand.
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Video calls, when they are arranged
Group calls happen from time to time and are announced in the group. There is no fixed calendar yet, so joining is how you hear about the next one.
What the group is for
Four things people use it for
Talking to people who get it
Most people with SCA12 have never met anyone else who has it. In the group they have. Sometimes that is the whole point.
Reaching doctors and researchers
Clinicians and researchers who work on SCA12 are members. General questions about the condition or the research can be put to them through the team. Questions about your own care belong with your own clinician — the group is not a clinic and nobody in it is your doctor.
Sharing your experience
What diagnosis, adaptation and daily life have actually been like. Told in the group, or — with your consent and on your terms — published here so the next family finds it.
How the group works
A few things everyone signs up to, so the space stays useful and safe:
- It is peer support, not medical advice. People share what happened to them. Nobody in the group — including the clinicians in it — is giving you advice about your own care.
- What is said in the group stays in the group. No screenshots, no forwarding, no sharing anyone else’s details outside it.
- No selling, no promotion. Treatments, supplements, clinics, products — none of it, from anyone.
- Be kind about hard things. People join on their worst days as well as their good ones.
- Leave whenever you like. Ask and we remove you from the group and, if you want, from the registry.
Contribute
Ways to help build this
Cure SCA12 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 SCA12 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 SCA12 community
Fill in the form, hear from one of us, and be added to the group. The form is our patient registry and asks for clinical details — please read it before you start.