From 1st to 3rd June 2022, the Euan MacDonald Centre and University of Edinburgh hosted the European Network to Cure ALS (ENCALS) international conference.
Researchers from MND-SMART were part of over 600 delegates from across Europe to gather in the University's McEwan Hall in Edinburgh. The weather was kind and everyone greatly appreciated being able to meet in person again. Two MND-SMART researchers, Dr Charis Wong and Amy Stenson presented posters with Charis winning a prize. We asked both Amy and Charis, along with Kathryn MND Specialist Nurse & MND Researcher based in Ipswich for their comments on being able to attend ENCALS this year.
It was fantastic to meet and connect with MND/ALS researchers (in-person!) from across Europe. I enjoyed learning about advances in MND research across various fields from stem cell studies to psychology to clinical trials, and found many of them thought-provoking.
I presented a poster on how we are developing a system using different types of data to inform how we select drugs to take forward to clinical trials in MND-SMART
I wanted to be able to ask some of the best in the world working on MND, "What do I say to patients who ask why do I have it?"
Their answer was both gentle and compassionate considering their level of expertise and prestige. They said "Tell them we do not know, but are working hard to find out. Reassure them about the reasons of blame they have come up with in their own minds."
I found that the conference took me from the highest levels of academia, back to the fundamental reason of caring for those in need.
I really appreciated this opportunity to meet all of my co-researchers in the field. I learnt all about nursing practices across research and one of the most enjoyable sessions for me was sharing insights into how to make research the new standard of care. I presented a poster about how the MND-SMART trial design, a novel drug platform for pwMND, has adapted to meet the challenges of the pandemic and improve accessibility of trials for all pwMND throughout the disease and across the UK.
Our thanks to the ENCALS 2022 organisers and hosts, volunteers and sponsors for such an informative, collaborative and engaging event.
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You can read the full Euan MacDonald Centre news article about the ENCALS conference here.