Having a chronic condition can give you a new perspective on life and how you chose to live. Gaynor Edwards – our current CEO – shares her own perspective and reason for passing on the baton:
The importance of balance is hardly an alien concept to anyone with Parkinson’s. Perhaps if the typical A type personality YOPDer had considered life-balance a little sooner, they wouldn’t now find themselves managing a neurological disorder. Just a thought.
Life is all about balance… whether that’s managing to stay on two feet, work-life equilibrium or learning how to rest, digest and recover from everyday life stress or significant trauma.
The role of CEO for Spotlight YOPD has given me some incredible opportunities and introduced me to some fabulous people. I’ve made the most of these experiences for the charity but seven years since the charity was founded, I think it’s time I passed the baton – and believe we’ve found the perfect person to run the next leg of the relay.
Nearly 11 years since my own diagnosis, I want to squeeze as much life and fun out of the next couple of years as possible. My membership of the community is for life and my networking is, I suspect, part of my DNA – so I will still be around and flying the charity flag as a patron.
I know – for many – progress in ‘Ending Parkinson’s’ may seemed frustratingly slow. It’s been a long 200 year til now.
So many today are waiting to be assigned a Movement Disorder Specialist or a Parkinson’s nurse. Seemingly the YOPDer in the UK is well described as ‘the patient’.
The neuro-physiotherapist, gynaecologist, endocrinologist or others that might make up the (often spoken about but rarely experienced) ‘multi disciplinary care team’ are still few and far between.
For a little charity operating on a shoestring, we’ve made our mark, punched above our weight and represented and supported a community that has often been sidelined and misunderstood.
We learned, sometimes through necessity, sometimes through observation and understanding of the condition, where a different approach might be of benefit.
My hope is that the next CEO will continue with that alternative open-minded approach… while very much having their own style of driving the charity to the next level.
Here are a few of the values we believe in as a charity.
In the words of Jessie J, ‘It’s not about the money’.
Of course we need money to survive and thrive but (from observations outside) money is not always spent well. We also don’t want to be seen as competing with other charities for a small pool of Parkinson’s funding. We want to work with other charities and support them wherever possible.
We’re not looking for a cure. We are more interested in understanding the cause.
We’ve always held the fairly basic view that you have more chance of curing something if you know what the cause is.
Other charities – notably Cure Parkinson’s (the clue’s in the name) are looking into pharmacological possibilities for better treatment and clinical trials. We are happy to support them, especially when it comes to YOPD specific approaches.
Helen Matthews is a brilliant woman and has been a good friend to me personally, and to Spotlight YOPD as a charity partner. We are delighted that she’s finally stepping into the CEO role at CP.
It’s taken a long while, but similarly we are delighted that we now have a good working relationship with Parkinson’s UK. Caroline Rassell has been a breath of fresh air as the new CEO and has put in the miles and the effort to meet the community and understand YOPD specifically.
And the fact that these two female CEOs have a very positive working relationship with each other, and with us should give the whole Parkinsons community hope for future progress – certainly within the UK.
When Spotlight YOPD was founded in 2016, we almost immediately packed our bags to attend our first World Parkinson Congress in Portland, Oregon. I’ve written about this, but it was truly life changing.
I’m sure many who attended the latest WPC in Barcelona, will understand why and yet its impact really has to be felt and experienced rather than just written about.
Thanks to Eli Pollard for putting scientist and patient in the same room. Who knew they had something to talk about?!
The WPC was the first time we dipped our dystonic toes into international advocacy. We’ve waded in pretty deep since then. Progress has gone from our tiny partner table, where I put stick-on Parkie Power tattoos on willing victims to a graffiti wall for all YOPD to leave their mark.
Too many others to mention – but I need to give a big virtual tummy tickle to the loveliest board of trustees, largely kept in line – despite my best maverick efforts – by my chair and friend of nearly 20 years Nikki Cole.
To all those who have supported in any and every other way … the hugest of THANKS!! Keep supporting us – I think you’ll like my replacement.