We may not have control over our diagnosis, but how we face the challenge of Parkinson’s disease, is ours to determine.

Soania Mathur was 27 and expecting her first child when she was diagnosed with Young Onset Parkinson’s. Resigning as a medical practitioner, she is now dedicated to advocating Parkinson’s research and educating people with Parkinson’s on how to optimise their quality of life and the importance of clinical trial participation in the search for better treatments and a cure.

There are a few people that I’ve come across during my journey with Parkinson’s disease, people that you can see are visionary, whose dedication to the community is so selfless and passionate that you can’t help but be inspired by them. Tom Isaacs embodied those qualities. His insightful and impactful vision of patient involvement in identifying needs and urgently pursuing the discovery and development of better treatments and the search for a cure, will be a part of his legacy. His words will, I’m sure, continue to inspire the Parkinson’s community to continue work together to reach our common goal – a world without Parkinson’s.

Tom (above with Soania), who founded The Cure Parkinson’s Trust (CPT) and lived with Parkinson’s, saw himself and others with the condition as active participants in the search for better treatments and a cure. His core belief was that patients must be involved at every step of the way. Sonia captures the essence of these principles and outlines four ways in which people with Parkinson’s can engage in the journey which will eventually relegate this condition to the history books.

1. Patients as resources

It will not be possible to progress toward better treatments without fully understanding Parkinson’s. The best people to inform the scientific community about this are those living with the condition every day, experiencing the tremendous variability in symptoms which is so hard to capture and convey in a one shot clinical encounter. They represent the only source of this essential knowledge, and their testimony and voice are invaluable.

2. Patients as informed partners

It is essential for people with Parkinson’s to be truly well informed in order to engage actively with research, as they do in their clinical care. Clear communication between researchers and patients is essential, and the community must push for better communication of trial results, free of hype and jargon.

3. Patients as policy advocates

Although financial constraints are an obvious rate limiting step for research, Isaacs argued and Mathur reinforces that teamwork is actually the only thing that can actually create progress. People with Parkinson’s can become powerful advocates, help shape policy, leverage funds from third parties and engage philanthropists. Teamwork is key.

4. Patients as clinical trial ambassadors

It is in the best interests of people with Parkinson’s to be actively involved and collaborate in shaping clinical trials. They can convey the voice and priorities of the community to scientists. But they can also help trial efforts by dispelling myths around it within their community, sharing information about trial recruitment and actively engaging in speeding the long process from lab to pharmacy shelf, approximately half of which is taken up by trials. Mathur writes that about 85% of trials are delayed by recruitment difficulties and a shocking 30% fail to recruit a single subject. There is no time to spare or room for wasted effort.

In the words of Tom Isaacs, “

We, as patients, represent an enormous and untapped opportunity to bring urgency (experience, focus, passion and feedback) to the delivery of the science and to become a significant resource in the quest for a cure. Without such participation, there is little hope that new products will truly meet the actual needs of the people they are made for, nor will they be delivered with the urgency that is required.

Soania's article will be published in full in the European Journal of Neuroscience (EJN) in early 2019 - this is a Special Edition dedicated to Tom Isaacs ~ The Epitomical Mover & Shaker 

CPT is delighted to see some superb extracts of research articles being published online as part of the lead up to the EJN Tom Isaacs Special Edition which is to be published in full in early 2019. So many great contributions has meant that many articles are still under review. We are keen to maximise this wonderful opportunity with the EJN and will publish these articles and special edition once published.