About us News Introducing your young champions We are so happy to introduce you to three of your new young champions. Say hello to Lucy White, Ellie Bedingfield and Jonathon Harding-Rathbone. Lucy, Ellie and Jon are going to build a "family" network for young people so they don't feel so isolated and will champion the cause of dystonia. They have already started working together to make plans so watch this space for more news soon. Lucy White "My name is Lucy, I am 43 years old and suffered for the last 4 years with upper limb dystonia and spasmodic torticollis. I have recently had DBS and so far feel good and it was well worth having after years of being misdiagnosed and Botox. I work full time and try to enjoy life as best I can but now I just want to help others. It's a lonely life but it doesn't have to be xx" Ellie Bedingfield "Hello everyone my name is Ellie. I'm 21 years old and from Dereham, Norfolk. I was diagnosed with dystonia in December of 2017, and since my diagnosis, I have met many people that have never heard of dystonia and that support in my area and surrounding areas is very limited and that needs to change. So not only would I like to spread awareness, I would love to support others in a similar situation to mine as going through dystonia doesn't just affect the body, it can affect feelings and emotions around it all, it can be a very lonely and upsetting time without others to talk to and I will always love to give a supportive hand in any way I can." Jonathon Harding-Rathbone "Hello, my name is Jon, though people know me as Borderline Jon on the web due to my YouTube channel. People look at me but most of the time they don't see what's wrong with me, because it isn't obvious like many disabilities. I tell people about my condition because most people haven't heard of it, and I want to raise awareness. Most people have heard of Parkinson's, yet you mention dystonia and people look at you confused. I'm excited to work with Dayna (Dystonia Society Head of Fundraising and Communications), Lucy and Ellie because the whole world needs to be able to see. But more than that, they need to understand, and those who can have the condition need to see there's help out there. We should never feel alone, yet many of us start off that way. As young champions we will strive to be seen, heard and understood. But more than that, we will help others like us because no one should ever feel alone. We can't wait to reveal more!" Are you interested in being a Young Champion? We would love to hear from you so please get in touch!