Katy Styles

What is your motivation to become a trustee of the MND Association?

Working with Association staff, volunteers and members has given me a wider understanding of the strategic aims of the Association and has strengthened my communication skills, which I gained over eighteen years of teaching.

I have worked extensively with the different teams within the MND Association on a variety of projects, such as, the financial impact of MND through to working with the Campaigns team to develop the "Campaigns Toolkit" which has supported over 300 campaigns network members.  I advise the Campaigns Team to ensure Campaigns Contact Weekends fully meet the needs of campaigns contacts.

My husband Mark was diagnosed with Kennedy’s Disease – a slowly progressive degenerative neuromuscular disease. Kennedy's Disease has similar traits and impacts to MND and is supported by the MND Association.

I have been involved in many 'firsts' for Kennedy's Disease – speaking at the first UK Kennedy's Disease Patients Day, being part of the Kennedy's Disease Clinic video and organising the first social media scheduled message to mention Kennedy's Disease.

Whilst my life has changed, I am determined to be positive and ensure that my experiences of caring as well as my skills are put to best use.

What experience and skills will you bring to your role as a trustee?

I am a nationally recognised carer and health campaigner and won the Sheila McKechnie Foundation Campaigner Awards 2020, for best digital campaign.

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 have volunteered with the East Kent Group of the MND Association for eight years, as a Campaigns Contact. 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. Kent County Council were the first county council to adopt the MND Charter after I approached them. When the MND specialist left our local hospital trust, I successfully lobbied to get those people living with MND allocated to a new neurologist.