Katy Styles

Katy Styles

I am a nationally recognised campaigner, having won a UK Parliament Award in 2019 for Digital Campaigner of the Year with We Care Campaign. I founded We Care Campaign to highlight unpaid carers issues and amplify their voices. In 2017 I was runner up in the SMK Campaigner Awards, for work with MND Campaigns, and won a scholarship to attend specialised campaigns training in 2018.

I have been particularly successful in highlighting the financial support disabled people and their carers need, and played a significant role in getting the Government to remove Carer’s Allowance from the benefits cap and to exempt people with terminal conditions like MND from unnecessary re-assessments for Employment and Support Allowance (ESA). My contribution to this has been recognised by MPs on the floor of the House.

I volunteer with the East Kent Group of the Association, as a Campaigns Contact and committee member. I was a General Election Campaigns Champion with the “Don’t Let Me Die Without A Voice” campaign in 2015.

Locally, I have successfully influenced a range of decision makers from politicians, commissioners and individual healthcare professionals, to improve access to health and care services.

My husband Mark was diagnosed with Kennedy’s Disease – a rare slowly progressive degenerative neuromuscular disease, in 2010. I am Mark’s full time carer, which I manage alongside my volunteer campaigning role. Volunteering nationally and locally has given me a passion to ensure people living with MND and Kennedy’s Disease, their families and carers are heard. Nothing is more powerful than our personal stories and believing that together we can make a change.

For further information and support contact our MND Connect helpline

mndconnect 0808 802 6262