The interests of neuroscientists and people with Parkinson’s (PwP) are inextricably linked in a symbiotic relationship. Increasingly, funding agencies are unwilling to grant research funds without evidence of PPI involvement. Clinicians readily admit that they gain insights and ideas for future research from their patients; we are then needed as trial participants.

Yet when it comes to the easy-to-understand sharing of trial results, PwP are often excluded, the language of journals being mystifying to a non-scientist. Explaining the significance of research findings, and thus offering hope to PwP, then becomes the responsibility of the Parkinson’s charities.
Which is possibly why the most recent Parkinson’s UK three day Research Support Network Conference, held in October via Zoom, was such a huge success, with around 2500 registrations. It was organised by PwP, tailored at the appropriate level for PwP, and each of the 12 pre-recorded sessions included a PwP. Presenters were available for live Q&A after each session. Over 39 expert speakers – academics, neurologists, and media personalities – covered a variety of topics including:
  • A learner’s guide to Parkinson’s research: What is Parkinson’s and what causes it? What new treatments are currently in development?
  • Improving lives today: Latest research to help people manage their PD better; diet, gut health, and probiotics.
  • The future of Parkinson’s: Sub-types; the future of clinical trials; technology, apps, and devices.
The following comments from some of the attendees speak for themselves:
“Knowledge, commitment, enthusiasm, and overall positive, uplifting atmosphere!”
“I feel much more confident that I will be able to manage my Parkinson’s more positively in the future.”
“…the conference was incredibly useful and made me feel a little less helpless…”
“On 11/06/20 I was diagnosed with Parkinson’s and within a few weeks, my world collapsed. I lost my job and suffered anxiety and depression. You have given me hope. Thank you for a fantastic 3 days.”

Paula Scurfield

11 January 2022

Paula Scurfield