“Bench to Bed”

Posted: October 15, 2013By: Chris Boughton

There has been a significant amount of media exposure for Parkinson’s disease (PD) in the UK over the past week. Firstly a trial was announced for a new procedure to utilise and deliver the protein GDNF, with a request for participants to take part in a human trial. Then a few days later, scientists announced that they had identified a chemical that prevented the death of brain tissue caused by neurodegenerative diseases in trials on mice. Later in the week, a terrestrial TV channel featured a new treatment that uses ultra-sonic sound waves on the brain to relieve tremor in conditions like PD. And there was also a separate TV clip of a patient undergoing established brain surgery (Deep Brain Stimulation). All of this is potentially good news for people suffering from PD, but realistically the new research prospects have a long way to go before any of it reaches the patient; that is assuming trials prove successful. There will be many obstacles along the way, but the biggest one will almost certainly be funding.

Charities in the UK currently contribute around £6 million a year towards PD research. However, having just spent two hours on Google, it appears that estimates for the cost of delivering a new drug to market (known as ‘bench to bed’) vary between £80 Million and £8 Billion per drug, and the gestation period is typically 10 years. These are quite frightening statistics, which highlight that finding potentially effective new treatments, especially for incurable diseases like PD, is by no means a guarantee of ever getting them to the patient. Charities do great work, particularly in support of people with PD, but in terms of research for improved treatments for PD, they barely scratch the surface financially. However charities are a vital part of the research process in that they often fund areas of bold research that may otherwise have not been pursued due to lack of funding.

Two years ago my younger son Oliver ran a half marathon to raise money for the Cure Parkinson’s Trust. As the charity’s name suggests they focus on raising money in the search for a cure for PD rather than providing general day-to-day support for people with PD. Oliver has just been accepted to take part in next year’s London Marathon, where he will once again endeavour to raise as much as he can for them. I cannot begin to express how proud I am of him for embarking on this venture. Like many who enter these marathons, Oliver is not a serious runner and the training will be time-consuming and no doubt physically painful at times, especially during the winter months. Only a very small percentage of people with PD can engage in fund-raising activities like marathon running, themselves, and consequently most of us rely on relatives, friends and supporters to do this on our behalf. The amounts raised may be relatively very small but it all helps to kick-start innovative areas of research and raise awareness of Parkinson’s disease, which will hopefully lead to the high levels of corporate and government funding needed along the 10-year ‘bench to bed’ journey.

The first two weeks of the final year of my BA in English and History have been reasonably successfully navigated. There have been seven lessons so far and I have missed just one. I would rather have missed none but, to finish on a positive note, the score so far is ‘Chris 6 – PD 1′.

Chris Boughton

Chris Boughton

I was diagnosed with Parkinson’s disease (PD) in February 2004 at the age of 51 having experienced undiagnosed symptoms for at least 4 years prior to that. My wife and I have five adult children and three grandchildren. We are fortunate in that we live in a lovely rural part of the east of England, with King’s Forest situated nearby for my much needed, therapeutic dog walks. I spent most of my working life involved in electronic, mechanical manufacturing management within the Worldwide Broadcasting industry and I am extremely lucky to have travelled extensively through my work. Since I was diagnosed I have dedicated much of my time to researching all aspects of PD and trying to both support others with this illness and raise the profile of PD. As well as writing a blog on this website, I administer an internet patient forum for people with PD which I set up in September 2008 and it currently has over 150 members. I also administer the forum’s Facebook, Friends Reunited and Twitter pages. My younger son recently ran in a half marathon race to raise funds for the Cure Parkinson’s Trust. I am currently studying for a BA (Hons) in English and History as a mature student.

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