Lived Experience

Read lived experiences of people with Ataxia and other rare diseases. If you would like to share your story, we would love to hear from you- please get in touch with us using the button at the bottom of the page.

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Louise Trehane, who suffers from Ataxia, speaks with her husband, Karl Trehane, a trustee of Ataxia & Me. They share their story through poetic dialogue. Recorded by: Abergavenny Writing Festival.

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Alan Thomas, founder and chairman of Ataxia & Me, shares his experience with Cerebellar Ataxia. Recorded by: Rare Beacon.

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Danne Geson Winneräng, wrote the song 'War Inside' during one of the toughest periods in his life. The song reflects some of the emotions, struggles, and thoughts that can come with living with a progressive condition like SCA-14.

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