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Insight into Parkinson’s: “I thought it was an old man’s shaky disease”
Author: Simge Eva DoganPublished: 4 April 2019
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From 11-13 April, over 50 Parkinson’s experts, activists and bloggers will be speaking at ‘Insight into Parkinson’s’ – the largest online Parkinson’s summit in the world.
We caught up with four speakers from this year’s line-up to discuss their own connections to the condition, what attendees can expect from the event – and why they hope to be part of “the last generation without a cure”
What is your connection to Parkinson’s?
Omotola Thomas, Parkinson’s advocate and founder of ParkinStand, UK: “I was diagnosed with Parkinson’s in 2016, aged 35. Even though I had suspected it for over five years – when I first noticed a twitch in my finger – I was not prepared. It was a truly frightening prospect. Currently I am an advocate for the condition with a keen focus on bringing global awareness to Parkinson’s in Africa.”
Erin Smith, award-winning researcher and creator of FacePrint, US: “I am dedicated to the early detection and prevention of neurological and psychological disorders – and to redesigning healthcare. Most recently, I developed FacePrint, a screening and monitoring tool for Parkinson’s.
One of my favourite elements of my research has been the opportunity to work with people living with Parkinson’s around the world. I’m especially grateful for all of the individuals who have taken the time to share their stories with me. Their stories are the reason FacePrint exists today.”
Dominic Graham, Operations Director, European Parkinson’s Disease Association (EPDA), UK: “I don’t have a personal connection to Parkinson’s, but my mum – Lizzie Graham – co-founded the EPDA back in 1992 when she was working with Parkinson’s UK. Her commitment and passion towards people with Parkinson’s were an integral part of my upbringing, and I’ve clearly inherited these qualities. I can’t think of anything I’d rather do than support the Parkinson’s community to get what it needs.”
Elisabeth Ildal, Danish politician and founder of Cure4Parkinson, Denmark: “I was diagnosed with Parkinson’s in 2013, at the age of 53 – and it took seven years of hospital appointments to get to that stage. I never thought it could be Parkinson’s. I thought, like the rest of the world, that it was an ‘old man’s shaky disease’.
“After attending the World Parkinson Congress in Portland in 2016, I promised to spend the rest of my life spreading awareness of the condition. That same year, I founded Cure4Parkinson, a training centre for people with Parkinson’s. I’m using my voice for young people with Parkinson’s – and I hope to be the last generation without a cure.”
What are you looking forward to the most at the ‘Insight into Parkinson’s’ summit?
Omotola: “Having looked at the line-up of speakers, I am drooling in anticipation for their stories, insights and words of wisdom.”
Erin: “I am especially excited to be exposed to the intersection of people in the Parkinson’s community. I believe that the summit will help start much needed conversations on scientific innovation, fundamental research advancements and patient-centred care. The summit will facilitate momentum and growth among the Parkinson’s community.”
Dominic: “It’s the potential that excites me most. There are so many challenges for people with Parkinson’s and their families in the quest for quality information that’s right for them. Physical congresses (such as the World Parkinson Congress) are amazing experiences for those lucky enough to attend. But what about those who cannot travel or cannot afford to attend? The EPDA is an affiliate partner for this year’s summit – and we think it’s a great opportunity to help promote our vision of a united, global Parkinson’s community.”
Elisabeth: “I’m excited to meet all my fellow people with Parkinson’s and my friends from around the world.”
Do you think Parkinson’s receives less attention than other conditions?
Dominic: “Yes, I suppose it does compared with Alzheimer’s and cancer, for example, but that’s nothing new. Alzheimer’s was boosted around a decade ago when the president of the European Union at the time (former French President Nicolas Sarkozy) unveiled an ambitious plan to combat the disease due to a personal connection. Research and awareness efforts have benefited ever since.
Parkinson’s needs something similarly high profile. The US has Michael J Fox, and we all know how significant his support for Parkinson’s research has been; Europe and the rest of the world needs a few more Michaels and Sarkozys. The EPDA is looking for high-profile Parkinson’s champions to support our political advocacy activities, but it’s not easy.”
Elisabeth: “In Denmark, more than 7,000 people have Parkinson’s. In a way it is a hidden condition – people hide because of its symptoms. We need more healthcare professionals specialising in Parkinson’s. It’s a lot more than shaking.”
Omotola: “I believe Parkinson’s receives less attention because most people do not fully grasp how debilitating it can be, and its wide-reaching impact on individuals, their families, and their communities.”
What do you hope the summit will achieve?
Erin: “I hope it creates conversations that will continue to unfold after the summit and lead to tangible changes – and a future without Parkinson’s.”
Dominic: “The EPDA’s presentation at the summit is all about working together for the greater good – it’s about the importance of uniting to achieve our aims. There is so much more we can achieve together, working across boundaries, than if we just did our work in the bubble of our own back yard. The EPDA represents people from dozens of countries, so we know only too well the challenges that face some cultures compared with others.”
Omotola: “Well, for one, I hope it achieves its aim of raising AUD $1 million. Of course, money should not be the primary objective of a summit like this, but it’s worth noting that those funds will go towards finding a cure for Parkinson’s.
“I hope, more than anything, that the summit arms people with Parkinson’s with the knowledge and tools they need to live their best lives.”
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