A patients perspective
Following our involvement hosting the panel session at the 10th Gretchen Amphlett lecture in April 2019, the East of England Research Interest Group were privileged to be asked to represent patients with Parkinson’s at the CamBioScience research conference on ‘Development of the Dopaminergic System: From Stem Cells to Circuits‘ otherwise known as DDSSCC2019.
This post represents my personal views as the lucky member of the RIGeast steering board available to attend, 13-15 May 2019 at the Fodele Beach Hotel, Crete. Much gratitude is owed to CamBioScience and Parkinson’s UK Research Support Network for enabling our participation in this conference. Further details are available online in the conference abstract booklet
“Being a lay representative at this conference was like drinking from a fire hydrant.”
Although I have no background in biology or chemistry, I have had Parkinson’s for nearly 10 years when I was diagnosed aged 44, as well as experience of caring for my father-in-law who also has had the condition for over 20 years. Like many others in the Research Support Network, I find taking part in the research makes me feel more in control of the condition whilst helping to move things on towards an eventual cure.
This was my first involvement at a basic research conference, adding to the dozens of research related volunteer and PPI activities I have thrown myself into since my diagnosis in 2010. The first two days were long and full-on from the start. There were over 60 attendees from around the globe, each expert in their own field from a wide and deep field of scientists. Just about everyone got to present their latest work, either through a brief but intense formal presentation, or via the Poster sessions.
“My brain is full, and it hurts.”
Every speaker talked passionately and knowledgeably in a way even I as a Lay representative could just about follow. All commented how long overdue such a gathering had been needed, to get everyone on the same page as the levels of understanding and funding in stem cell research boomed with the promise of some significant breakthroughs looming on the horizon.
The final day was more tangible to me as it dealt with the cell replacement strategies for Parkinson’s Disease and some of the clinical trials in development. Whilst there was no EUREKA moment, as far as I could tell, the mood and buzz throughout the whole event was very positive indeed.
“There is no failure, only feedback.”
What struck me throughout many of the presentations was just how mind-blowingly complicated this whole field of bio-science is. It really highlighted how we were trying to unravel the secrets of Billions of years of evolution to decode our biological stew-of-a-brain, all in the blink of an eye. And an eventual result cannot come quick enough for us im-patients!
However, as an engineer and a potential recipient of such treatments for my condition, I was also mindful that major challenges remain :
- The many unknown, unknowns frighten me
- Even the known, unknowns are worrying – to the Lay reader
- And the commercial drivers, particularly in this age of austerity, depresses me
Here are some of the key lessons I learnt and would like to share:
- Continue to include Patient Involvement in future events, even for basic research content
- Allow patients an opportunity to feedback to the event/audience
- Include Patients in any Poster Sessions so they can explain who they are, what they represent/can offer, how they can assist and what outcomes they are hoping to achieve or take away
On balance, I am leaving this conference with a feeling of HOPE. It is through diverse, open and collaborative conferences such as this that spawn innovation and breakthroughs. Hopefully the choice of location was inspirational and the ingenuity of the ancient Minoan society will have rubbed off on all the participants. So, Godspeed with your investigations so that together we can take the LEAP OF FAITH needed to achieve clinical outcomes.
Andrew Cassy (aka @BoytonBoy)
East of England Research Interest Group
May 2019