Advocating a media presence

This is Hayley, she’s 30 now and was diagnosed with Young Onset Parkinson’s five years ago, aged just 25 – not long after she’d had her first child. Hayley is a working mum, bringing up two kids with her husband Gareth. She is contributing to the economy and the future of this country, yet she hasn’t seen a neurologist since diagnosis.

We first came across Hayley when we were trying to find people in their 20s and 30s with PD willing to appear in a BBC documentary. She struck us as just the feisty type of young Parkie we needed, happy to step into the Spotlight. Breaking all the rules of polite conversation, our chat turned to politics.

Hayley’s gorgeous accent then informed us, “My MP only lives round the corner; he went to school with my brother. You can find him on Facebook.”

So we did! We contacted Nick Thomas-Symonds, MP for Torfaen a few days before Christmas 2016. Within three months a small Spotlight YOPD contingent filed into the gallery above the House of Commons to watch from above the first ever debate on Young Onset Parkinson’s Disease. We had already been to Parliament twice, accompanied by some well chosen chums with PD, to give Nick the complete picture on YOPD – less known for its tremor and more for its stiffness and non-motor symptoms  –  including depression and insomnia.

Hayley is one of several Spotlight YOPD advocates happy to talk to the media in this bicentenary of Parkinson’s. Beyond awareness – Young Onset Parkies want to be counted, valued and continue to contribute for as long as possible. We’d quite like to be consulted and represented in NICE guidelines too… but more on that later.

MEDIA – please email if you would like to set up an interview with Hayley.

 

 

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