Keep In Touch

Spotlight YOPD is all over social media, has daily bulletins and an occasional 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. Click here to email.

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.

Gaynor'The Ed Girl' Edwards - Editor (also Charity Co-Founder and PR/Marketing Officer)

Former journalist Gaynor switched from publishing to PR and Marketing over a decade ago. She was diagnosed with PD  five 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.

Linked In profile

Meet the dog

Email Gaynor

Email the dog

Phone:  0845 0945 138 or 07956 142214

Sarah Collings - Writer/Psychotherapist '(The Female Issue)
Spotlight YOPD is delighted to have a psychotherapist working with us. Sarah Collings is a psychotherapist /senior practitioner, UKCP registered,  COSRT accredited psychosexual and relationship therapist and holds a P/G Dip in Clinical Supervision and Consultancy. She’s a bit of a find for us – also being a PWP – a ‘psychotherapist with Parkinson’s’, providing an invaluable insider’s view.

Lisa Vanderburg - Writer/Researcher (The Good, The Bad and The Ugly)

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!”

Dr Jon 'The Brain' Stamford - Former neuroscientist

Jon Stamford is a man with a dual interest in Parkinson’s. A neuroscientist by training, he spent more than 20 years heading a small research team looking at dopamine function in the basal ganglia and its relationship to Parkinson’s disease and treatment. Apart from brief spells working in the United States, most of this research was conducted at the same institution – the Royal London Hospital – where James Parkinson had trained.

In 2006, he acquired a different perspective when he was himself diagnosed with Parkinson’s in his 40s. Since 2008 he has been an active patient advocate, helping to improve understanding of this enigmatic condition. He served on the editorial board of Parkinson’s UK’s magazine THE PARKINSON for two years and was one of 16 ambassadors for the WORLD PARKINSON CONGRESS in Montréal in 2013. In 2010 he became a co-founder of PARKINSON’S MOVEMENT, a global patient advocacy group focused on ensuring high level patient representation and involvement in research and development. He remains director of Parkinson’s Movement and currently works for the CURE PARKINSON’S TRUST as a scientific and advocate communications coordinator. In 2014 he founded PARKINSON’S INSIDE OUT a small think tank of clinicians and neuroscientists who also had Parkinson’s. Jon is also a keen supporter of SPOTLIGHT YOPD.

Jon is a popular invited speaker on living with Parkinson’s and an active contributor to many advisory and research boards.

Jon Stamford has written several scientific books as well as others describing the patient experience of Parkinson’s and for many years wrote a popular weekly blog entitled Slice of Life.

Vicki 'The Original Parkie Party Girl' Dillon - Advocate and Karaoke Star

The Vickster represents Spotlight North…  A close friend of the late Tom Isaacs, Vicki’s plan for 2018 is to retrace his footsteps around the UK coastline, along with a few others.

John 'Scotland The Brave' MacPhee - Advocate and Stand Up

Not so much a PhD as a Ph-ee, the big Mac represents Spotlight YOPD north of England – as opposed to ‘The North’. The charity has yet to register itself in Scotland but that doesn’t mean we don’t work with people located north of England or anywhere else on the globe, for that matter.

Jordan 'The Graduate' Webb - Advocate and currently Youngest Parkie in UK #HayleyYOPD

Jordan is tall, dark and handsome… and since none of us are allowed to be that lucky he’s also the UK’s youngest person with Parkinson’s, that we know of. …

Hayley 'Poster Girl' Huxley - Advocate and Young Mum #HayleyYOPD

Hayley is a pretty, petite mother of two. She lives with her childhood sweetheart, now husband, in South Wales – ‘down the road’ from her MP Nick Thomas Symonds.

 

 

 

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