Epilepsy Awareness Day & Expo – held at Disneyland Resort, California.
I am the UK Ambassador, for this event, which brings people with Epilepsy (and Autism) and their families, from all over the world, together, for an action & learning packed three days, at Disneyland Resort. It’s an Educational Expo, which is free to attend.. as well as an extraordinary fun day in Disneyland Resort park.
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I am a founding member of the International League Against Epilepsy – YES (Young Epilepsy Section) Group, that launched in London in May 2018.
As a person with Epilepsy, I help to advise the Young Epilepsy Section (YES) of the ILAE, which is a world-wide organization of young people in the early stages of their career focused on the care of people with Epilepsy, and/or epilepsy research. This includes clinical and basic scientists, nurses, physicians, students, psychologists, pharmacologists, physicists, mathematicians, and other allied health professionals.
In 2016 I became an Epilepsy Hero, selected by Epilepsy Society (uk) and joined 10,000 people on The Mall in London for The Queen’s Patron’s Lunch celebrating Her Majesty the Queen’s 90th birthday.
Sam Downie has refractory Epilepsy, and has not let his own epilepsy stop him from working hard to help others. Despite his condition, Sam offers support to people locally, helping to run the Bristol Epilepsy Social Support Group.
Sam is a patient of Helen Hodgson, North Bristol NHS trust. Helen nominated Sam as an epilepsy hero because:
“Sam has been a positive campaigner for highlighting the needs of people with epilepsy both locally and nationally for many years. He helps support people locally and helps me run the Bristol Epilepsy Social Support Group and much more.
I feel Sam very much deserves the recognition for all the hard work he does and being chosen to attend the patron’s lunch as an epilepsy hero is a fitting and wonderful way to show appreciation and thank him for the commitment he has shown to help improve the lives of people with epilepsy. ”
Sam has also campaigned at a national level with the government and the department of health. He is involved in raising awareness of the condition by campaigning local clinical commissioning groups to stress the need for local investment in good quality services.
While supporting those affected by epilepsy in his local community, Sam is also involved with the Epilepsy Awareness Day & Expo at Disneyland Resort, California ( EADDL ) each year. The day brings together people with the condition, their families, friends and healthcare professionals. Sam shares the experiences via films and interviews he makes with people attending on the day.
A source of support and a listening ear for anyone affected by epilepsy, Sam has devoted his time to ensure that the condition is better understood and to improving the lives of people with epilepsy.
Sam: “Being nominated as a Epilepsy Hero, to attend the Queens Patrons Lunch is a fantastic opportunity for me to attend, not only as a person with lived experience of Epilepsy, but to represent Epilepsy Society, the great charity that has helped me, as well as others with the life-long neurological condition.”