Spotlight YOPD is all over social media, has daily bulletins and a monthly newsletter to subscribe to. Now in a more user-friendly format, the website will be constantly updated – but comments and submissions from the readership and the PD community are essential. Good, bad or ugly – your feedback is hugely appreciated.
We are always looking for help and volunteers to join us. We are open to ideas and if you have an idea that you want to launch for the greater good and benefit of all Parkies, we would be happy to have a chat and see what we can do to help.
Former journalist Gaynor went over to PR and Marketing over a decade ago. She was diagnosed with PD three years ago at the age of 42. Spotlight YOPD is partly her baby – an idea born at that time from the realisation that young Parkies were so woefully under-represented. As she says, “I’m a PR girl with Parkinson’s – what else was going to do?!”
To pay the rent, she runs a small Marketing and PR consultancy in Rye on the south coast – called Ozone Creative – having downsized and relocated in order to reduce stress and be able to walk the dog on the beach. Said dog – Ziggy – effectively runs both their lives – and appears to be set on world domination.
An independent writer/researcher for all things Parkinson’s related. Lisa writes, “No, I do not have a degree… what I do have is the unflinching eyes of about a thousand Neuro-noggins (Neurologists, Neurosurgeons, Neuro R&D and Neuro-Innovators) that will be only too happy to out me if I set a foot wrong, which is why I post most of my big stuff in LinkedIn.
“Probably my best are regarding PD and DBS, Alpha Synuclein, busting incumbents in my posts with ‘The Ground Realities’, Pinocchio’s face one, and the ones with MJFox’ face on them.
“My nicer half, Pete, was diagnosed in 2000 at age 49. I am both slave and driver (mostly without the ‘and’) and I’m cranky as all hell.
“On a more civil point, I also run a couple of Facebook groups and pages. One of those is 10 Million Tulips, a closed group to try and do something a little less fierce. We have about 5.25 thousand members, and we’ve been up for maybe a month. The idea is to present 10 million pics of tulips – one for each 10 MILLION sufferers globally. And I have had my eye-lids peeled back by the sheer grace and humility of all these amazing PwPs and carers – what a stalwart bunch of warriors they all are!”
Darren ‘Billy’ Taylor is co-founder of Spotlight YOPD. He went to school with Alex Flynn and, having been friends with Alex since then and more recently having met Gaynor, they came up with the idea of forming a much-needed charity for those with Young Onset Parkinson’s.
Billy is the fundraising officer for Spotlight – in a very hands-on role. Back in 2014, he was part of a four-man crew rowing the Pacific, and raising awareness for Young Onset in the process.
His ‘day’ job is as a Firefighter for Royal Berkshire Fire & Rescue Service. Along with his colleagues he will be cycling from Reading to Bath in the charity’s first official event this August.
Phone: 07917 412805