Living with it
Watch
Sometimes hearing someone say it is easier than reading about it — especially if you are trying to get a relative to take it seriously. These are all free, and all from organisations rather than individuals.
- Personal story
Bill Nye on the ataxia in his own family
SCA27B Ataxia Foundation, with the National Ataxia Foundation
For generations Bill Nye’s family called it "the Darby Glide" — a family name attached to an unsteady walk that kept reappearing down the generations. It has a name now: SCA27B. He has since partnered with ataxia organisations on awareness. If you want one thing to send to a relative who is struggling to take this seriously, it is probably this.
Watch - Explainer
Spinocerebellar ataxia explained
National Organization for Rare Disorders
A short, careful overview from a rare disease organisation with no product to sell. Good first thing to watch, and the accompanying text is worth reading too.
Watch - Community channel
The National Ataxia Foundation channel
National Ataxia Foundation
Years of accumulated material: research updates, conference talks, and interviews with people living with ataxia. The single richest video source on this condition, and it is free.
Watch - Ask a specialist
Ask the Ataxia Expert
SCA27B Ataxia Foundation
A neurologist answering the questions people actually ask, rather than the ones a leaflet answers. Useful for working out what to raise at your next appointment.
Watch - Community channel
Ataxia en Español
National Ataxia Foundation
A Spanish-language playlist. Worth knowing about if the person you are sharing this with reads more comfortably in Spanish than English.
Watch
Why these open in a new tab
An embedded video player starts tracking whoever loads the page, whether or not they press play. Someone reading about a rare disease diagnosis should not pick up trackers for it, so these link out instead. One extra click, and nothing follows you here.
Where these come from
- SCA27B Ataxia Foundation — SCA27B Ataxia Foundation
- National Ataxia Foundation video channel — National Ataxia Foundation
- Rare Disease Video: Spinocerebellar Ataxia — National Organization for Rare Disorders
- National Ataxia Foundation — National Ataxia Foundation
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For family and friends
If someone sent you this link, this is the page written for you.