I am Darren Calder and I have Parkinson’s . Diagnosed back in 2005, They say life begins at 40.... it was certainly the start of a whole new meaning of life for me.
In 2013 I took hold of the reins to guide my destiny and became a participant of a drug trial, documented on the BBC 2 show ‘The Parkinson’s Drug Trial: A Miracle Cure?’
GDNF is a protein which was under clinical trial for the treatment of Parkinson’s. Following the ground-breaking Phase 2 trial , I am raising funds for further investigation into this promising treatment which could lead to a Phase 3 trial.
I have developed this website to help keep the GDNF story alive, convey the importance of taking part in a clinical trial and raise the profiles of those incredible people who are proud to say we have done our bit!
Scroll down to find out more about the GDNF journey and why we need your help to move it forward.
Raise a million soundtrack
The amazing Vicki Dillon (one of the initial Phase 2 group testing the safety of the GDNF delivery system) has made a song! Rick Taylor, her singer and songwriter friend has written and performs "Shine" below in a Christmas Video - a great tune that has now become the GDNFers anthem.
Be warned though Parkinsons is much like a puppy, not just for Christmas but for life!!
The New Shine video will be out soon.
Key in GDNFers into You Tube to be able to find and download the song.
Proceeds of course going to GDNF
Why We Need Your Help
No doubt if you have navigated to this website, then you already have an interest in Parkinson’s. Maybe a close family member, friend or just someone you know has the condition, or perhaps you do.
You will be aware of the devastating effect this neurological condition, which affects around 150,000 people in the UK alone and an estimated 6-8 million people worldwide. It not only takes away your quality of life but that of your family and friends.
Many people face the condition alone, with no partner to share the burden of the symptoms which leave you utterly exhausted, in a mental fog and wondering what on earth hit you.
Those of us who have a partner who is willing to sacrifice their own life to cater for our needs are very fortunate, but we will never forget the day that a diagnosis of Parkinson’s changed our relationships forever.
Parkinson’s takes away choices, annihilates dreams and dictates a life of disabling, painful and frequently embarrassing symptoms. Look at the internet, listen to the experts, talk to friends, read books and articles and they will all tell you how important it is to be positive. Sound advice indeed and the best way to try to cope.
But how do you remain positive when your body feels as though it is encased in a suit of armour; you are unable to cope with more than one task at a time; your limbs are regularly cramping and dissolving into excruciating spasms; sleep is a precious commodity where 4 hours unbroken slumber is an absolute luxury; you cannot walk without shuffling and if you do manage to get out and about, you are seen as a drunk due to your constant shaking, vacant expression and your inability to speak renders you unable to contradict this impression.
Then along comes a clinical trial which could alter your otherwise hopeless prognosis. No promises, no expectations, but just the merest glimmer of hope that a future exists for you. Of course, whilst every cloud is supposed to have a silver lining, and the grass is apparently much greener on the other side, life is never that simple.
The ultimate price to pay for this potential pot of gold at the end of the rainbow is your life. A very hard decision needs to be made, although is it really that difficult? A chance of a life without Parkinson’s, or at least with no further degeneration, versus risky surgery to insert novel equipment into your brain in order to infuse an experimental protein. To some a step too far, but to the 42 brave souls who participated in this ground breaking trial, even the smallest chance of ridding themselves of the curse of Parkinson’s was worth embracing.
If you have already seen the documentary "The Parkinson’s Drug Trial; a miracle cure?" you will be aware of the results. Many have criticised the cruel way the documentary led viewers to believe that with the clear improvement in the participants symptoms, this would be a happy ending. It was not.
But if the fairytale was a disappointment to you sitting in your comfy armchair with a cup of tea and a couple of bourbons, just imagine what it did to the participants. We were briefed from the outset that we should not expect the treatment to work, but what we were not prepared for was to know that it worked, but to have it taken away. We were broken and battered, but after the initial shock, we dusted ourselves down, held our heads high and vowed to prove science wrong.
That’s why we are now campaigning for further research into GDNF. This should not be the end – there is too much anecdotal evidence and personal experiences to take into account. Scientific data may have failed to prove its efficacy, but what is more powerful – the fact that some of us can still feel the benefits and that it has changed many of our lives, or a sheet of paper with figures on which do not prove what is plain for all to see?
GDNF - does it genuinely not work, or has science just failed to prove it...
How will we ever know if we don’t pursue it further.
Darren and Jayne, with lots of support from many of you, have been busy fundraising over the summer. The Just Giving site has been extremely busy and as a result has now reached an incredible total of £35,973 as of 28th Sept 19, this is approximately 9 months since launching. Jayne and Darren would like […]Read More
Absolutely thrilled to announce that “the Parkinsons Drug Trial – A Miracle Cure?” won at the Grierson British Documentary Awards under the heading of Best Science Documentary. The Grierson Awards Ceremony was held in London on Thursday 14th November at the Queen Elizabeth Hall, see the video below of the finalists and acceptance of the […]Read More
Julie Mackie and Mike Smith. Thank you for organising the outstanding Cabaret and Disco Night held on Sat 26th October. Oh what a night!!! We were overwhelmed by your fabulous efforts! Much gratitude should go to your families and all your friends for their contributions ! An amazing £6,150 was raised from ticket sales and […]Read More
GDNF has been hailed as a potential breakthrough for Parkinson’s ever since it was discovered in 1993. In the lab, it was shown to bring dying brain cells back to life and it has proved to be particularly effective on dopamine neurons, the ones lost in Parkinson’s. However, the intervening years have seen the drug […]Read More
Reaching out to local branches and communities I have spoken to local Parkinson’s branches from Lytham St Annes in Lancashire to Bradford on Avon in Wiltshire about my experience of living with the condition and taking part in the GDNF clinical trial. The warm and enthusiastic welcome I have received, without exception, has been completely […]Read More
I would like to draw your attention to a donation of £500 made on the Just Giving Page from Tricia Hembrough. Tricia contacted me the week before last through a guest from our summer event. I was overwhelmed to hear that she is the widow of phase 1 participant, Richard Hembrough! I was fascinated to […]Read More
Message from Jayne – Coordinator for the Phase 2 GDNF Participants I happened across an eminent Consultant while visiting Southmead Hospital very recently and asked the question, “am I crazy to pursue my dreams to get GDNF delivered to the Phase 2 participants who may still want it under compassionate grounds?” The consultant told me […]Read More
Parkinsons develops when cells in the substantia nigra part of the brain start to die. These cells produce dopamine which helps the brain to control movement. It is the loss of dopamine which leads to the typical symptoms of the condition. Every hour 2 people in the UK are told they have Parkinson’s Around 145,000 […]Read More
Parkinson's UK Research Support Network (RSN) Conference November 2019
We were very pleased to be able to speak at this years Parkinson's Research Conference, here's our three speeches.
Thinking of applying for any further trials?
An ongoing trial looking for participants:
This article from medium.com is about taking part in a Parkinson trial, written by Katherine Fletcher (a Research Communications Officer from Parkinson UK) from the perspective of a participants motivation, concerns and outcomes:
We have a team of people behind the scenes working tirelessly raising funds and travelling the country to raise the profile of GDNF, including those who were involved in the trial with me, some of who have their own stories to tell...
My husband Tom Isaacs and I were the driving force behind getting GDNF back into trials. Tom set up The Cure Parkinson’s Trust for this very purpose. We championed Prof Steven Gill’s work with GDNF from 2004. Tom was one of the first six patients to take part in the GDNF trial, from 2012 to […]
Originally from Kent, I have lived in Oxfordshire for over 30 years. Having been pub landlords for more than ten years, we left the licensed trade in 1996 to spend more time with our young family. I then commenced working with the University of Oxford covering the administration of surgical teaching for medical students. Our […]
I was officially diagnosed with Parkinson’s in 2009, but I’d suspected I had the condition for around five years before that. I needed time to come to terms with it. After a few years, my wife and I decided that I ought to see someone to make sure we had the diagnosis right. Alan Whone (the researcher […]
Before the trial When it was announced that there was to be a clinical trial for something called ‘GDNF’ I wondered if I should apply, I studied the requirements and discovered that you had to of been diagnosed for at least five years. This excluded me, having only been diagnosed for four and a half […]
Diagnosis I was diagnosed with PD in 2003 at 43, which was identified by a process of elimination, apparently there was no clear test for PD at the time. The clearest symptom of which I was aware was micrographia (hand writing becomes very small and spidery), which prompted me to seek medical advice. I can […]
I was finally diagnosed with Parkinson’s on Valentine’s Day 2007 ! It had taken three years of being continuously fobbed off and told repeatedly I was ok. It was a very difficult time but getting the answer devastated me. I was 35 and quite frankly wanted to die! 8 weeks on I was ready to […]
A Caregiver’s Perspective. Wife to husband Darren Calder, Patient no 006 on the GDNF Phase 2 Clinical Study. I am also the coordinator for the patient group who, after the end of the Phase 2 trial came together to support each other and form a combined Patient voice after they have found themselves “out in […]
A Caregiver’s perspective. I am Colin Wynn, married to Lesley Gosden since 1981. She was confirmed as having Young Onset Parkinson’s over fifteen years ago at the age of 43. This mirrors the case of movie star Michael J Fox. The publicity generated brought to mass attention (possibly for the first time) the fact that […]
Family is all important, and I'd like to say a big thank you to ours, for their help and understanding and for rolling up their sleeves and supporting us with all our fundraising! Here we all are following the Summer event in 2019.
Help Our Cause
We are holding events throughout the year to reach a combined target of £1 Million, raised by the participants of the Phase 2 study.
We can no longer physically give our brains to medical science, this will require a fresh approach from more willing brave candidates who will take up the GDNF fight, however, we still have a lot to give and do want to contribute to the build & the success of the Phase 3 trial and to raise funds to pay for more GDNF to be made.
It is our express hope to be offered the chance to receive GDNF on compassionate grounds one day in the future while the phase 3 study is ongoing and for this we also need your help. Please look out for these fundraising events and help support them in any way you can. You could donate time or resources to the events, spread the word amongst your friends and attend with your loved ones.
To the wonderful trial team that are still battling to evidence that GDNF is indeed the breakthrough we all dream about, I say this:
Success is not final, failure is not fatal, it is the courage to continue that counts
If we don’t reach our target, all donations will go to the charity Funding Neuro, who are using the same delivery device to help treat children with brain tumours.