Age diagnosed: 49
Specialist interest: Research
“Self experimentation in medicine – my choice my decision” – read Jon’s latest blog piece
Check out Jon’s latest interview on advocate Ben Stetcher‘s blog – Interview with neurochemistry expert turned patient advocate Dr Jon Stamford
Working on a new book – working title “Parkinson’s Disease – A Survival Manual”
Jon has published three neuroscience books and more than 200 research publications (reviews, papers, abstracts) in an academic career lasting 23 years.
Since his PD diagnosis in 2006 at 49 he has been active in PD advocacy. He was a co-founder of Parkinson’s Movement (2011), and Parkinson’s Inside Out (2014), editor-in-chief of On The Move (2012-2016) and a World Parkinson Congress ambassador (2011-2013). Jon has spoken on PD at academic and patient meetings in Europe, North America and Asia.
As well as being on the editorial boards of Neurodegenerative Disease Management (since 2012) and Journal of Parkinson’s Disease (since 2015) he has written four books about living with PD and blogs about PD inter alia at jonstamford.com.
He claims to be retired but is not fooling anyone.
- Patient leadership and autonomy in research
- Communicating research to patients and public
- Clinical trials and studies
- Bridging communication gaps between patients and physicians/researchers
- Meaningful measurement in PD
- Presenting and writing
- Ethics of research conduct and reporting
What advice would you give to others who are keen to get involved in Parkinson’s research? –
“Take an interest in your Parkinson’s because, sure as heck, it’s going to take an interest in you”