CEO of Spotlight YOPD
Co-Chair of YOPD Leadership Group at the World Parkinson’s Congress
Gaynor Edwards is CEO of Spotlight YOPD, a charity representing those diagnosed with Parkinson’s under the age of 50. She founded the charity in January 2016, just a little over three years after her own diagnosis at the age of 42.
Recently turned 50, she is keen to emphasise that it’s the onset age which makes YOPD (Young Onset Parkinson’s Disease)a different syndrome.
“People get fixated on this 50 year cut off,” she says. “But really this is just a way of us ring fencing a group of people more likely to have genetic causes and more likely to be struggling to get a diagnosis in the first place. Those diagnosed under 50 will always be young onset. That includes people in their 70s and older who may have had the condition in excess of twenty years.
“The reason for shining a spotlight on these YOPDers is because we believe they hold the key to stopping this condition in its tracks and preventing it in future generations.“
Some YOPD have a genetic type; many of these types are still to be discovered. Finally this will give us something concrete as a cause of their condition. And if you know what causes the condition it makes stopping it in its tracks so much more possible than the more familiar needle in a haystack approach.
“Had I felt YOPD had been represented by the then existing charities, I would not have launched Spotlight YOPD but I’m so glad I did. It’s much needed and over the past few years finally there has been an understanding that the condition is different and needs to be addressed differently. So many YOPDers keep their diagnosis a secret usually to the detriment of their own wellbeing – hiding the scale of the problem.”
Gaynor Initially trained as a journalist before moving over to marketing and public relations. Up until diagnosis, she had a diverse career, heading up a PR and marketing agency in Tunbridge Wells where she also launched a number of community events and opened a vintage store. Before Tunbridge Wellsshe lived and worked in Spain, Southampton and London – as a writer and sub editor for newspapers, magazines and websites. Her love of a good headline continues. She now lives in Rye on the south coast along with partner Keith and terrier Ziggy. She has managed the day-to-day running of the charity from here for the past five years.
She is also proud to be co-chair of a YOPD leadership group for the WPC.
• Email Gaynor@ SpotlightYOPD.org