Age diagnosed: 42
Specialist interest: YOPD
“Young Onset Parkinson’s desperately needs its own guidelines; young onset people with Parkinson’s should be treated as a long term investment. Keep them well for as long as possible with suitable future treatment options.
“After four years of showing Parkinson’s symptoms I was diagnosed in 2012. I used my background in journalism, PR and Marketing, and founded a charity dedicated to Young Onset Parkinson’s, Spotlight YOPD, having discovered how under-represented those diagnosed under 50 are globally. I continue to run a small Marketing and PR consultancy but downsized and relocated in order to focus on the charity.”
Why is the World Parkinson Congress (WPC) important to you and what do you hope to gain from the congress?
This will be my second WPC – having attended 2016 Portland as a last-minute entry.
The conference is important to me because it’s a very clear indicator of the scale of this global problem; it doesn’t discriminate by age, gender, culture or race. There is a powerful, passionate community (including clinicians and researchers) who all are devoted – along with the patients – to solving this very complex issue.
It’s my understanding that the WPC is exceptional as a patient-led, totally inclusive event. No other condition – possibly because of its complexity – has such diverse community participation working together in belief and hope.
I expect this WPC will reveal more of the same… Although bittersweet, it’s reassuring to see the next generation of both advocates and researchers coming through.
My greatest hope is that they will learn from us and from those who came before us – talk to us, don’t repeat what has gone before. We will happily hand over the baton if the new blood is ready to run with it – knowing we will always be there watching, supporting and cheering from the sidelines.
The aim of Spotlight YOPD is to give Young Onset people with Parkinson’s the information, support and confidence to get the help they need for their own (very individual) life with Parkinson’s.
We will work alongside and complement the other Parkinson’s presence out there – from bloggers to larger charities, provided their ethos fits ours.
Our biggest accomplishment to date was the Young Onset Parkinson’s debate in Parliament (available to watch in the ‘Action’ tab), which led to the subsequent meeting with the under secretary for Health.
We are partners with the World Parkinson’s Congress – Portland 2016 and Kyoto 2019. We are also a member of the Neurological Alliance and Genetic Alliance/Rare Disease Group.
We are campaigning for separate Young Onset Parkinson’s guidelines.
Gaynor is newsletter editor for Parkinson’s Movement and works closely with The Cure Parkinson’s Trust.