Stories and Experiences. -

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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Cerebellar Ataxia

February 22, 2024

Living with Lipodystrophy- Becky Smith

August 26th, 2021.

Ataxia has NO borders

March 28th, 2021.

Megan's Journey: eSCAping Type 1.

August 21st, 2021.

Ataxia - The Mental Side Affect.

From Challenging Phases to Facing Challenges.

Emily's 427 Mile Trike Ride with Ataxia

Darcy's CACNA1A Story.

Poland Syndrome Awareness and Me.

Late Onset Cerebella Ataxia

Lisa Atonelli Cole's Long Journey to Diagnosis.

Linda's South African Story.

Refsum Disease

February 16, 2024

More Than What's On The Surface.

15 Years of Rare.

YouTube Links

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.

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

Contact us using the button below:

View the blog template:

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.

Search for a blog:

Cerebellar Ataxia

Living with Lipodystrophy- Becky Smith

Ataxia has NO borders

Megan's Journey: eSCAping Type 1.

Ataxia - The Mental Side Affect.

From Challenging Phases to Facing Challenges.

Emily's 427 Mile Trike Ride with Ataxia

Darcy's CACNA1A Story.

Poland Syndrome Awareness and Me.

Late Onset Cerebella Ataxia

Lisa Atonelli Cole's Long Journey to Diagnosis.

Linda's South African Story.

Refsum Disease

More Than What's On The Surface.

15 Years of Rare.

YouTube Links

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.

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

Contact us using the button below:

View the blog template:

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