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Personal Stories

We put people affected by MND at the heart of everything we do. From our Awareness Month campaigns to media work, their stories are vital to raise awareness of the reality of the disease.

These pages offer an insight into what it’s like to live with MND or have a loved one affected by it. MND affects people from all communities and ages so help us reflect that diversity by sharing your story…

Share your story

Gemma Middleton

Gemma was diagnosed with motor neurone disease in June 2016 and shares her experience.

Olly Clabburn

Olly’s dad had MND and died in April 2004. Olly is now researching the value of digital legacies for people affected by MND.

Heather Smith

Heather’s partner Steve had MND and died in March 2012. Since then Heather has been fundraising and volunteering as a Campaigns Contact and Trustee.

Ricardo Andrada

Ricardo was diagnosed with MND in 2010 and talks about how the MND Association and his local hospice have supported him.

Heather Tilley

Heather describes how fundraising for the Association helped her and her family cope with her mum’s diagnosis of MND.

Amina Memon

Amina’s mum Banu had MND and died in April 2016. Amina shares how despite the cultural differences, Banu died with dignity.

Find out more: What is MND?
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