Dystonia Superstar Award

The 🌟 Dystonia Superstar Award 🌟 is your chance to recognise a superstar in the dystonia community - whether they have dystonia themselves or not, they are someone that has made a difference to you or others. It’s up to you to decide what makes them a Dystonia Superstar, we know there are many and fully expect this to be a really hard category to pick a winner from!

Andrea “[Andrea’s’] life centres around her foster daughter (A) who has been with her for over 6 years and has just had her 10th birthday. A has dystonia and cerebral palsy… She is non-verbal, wheelchair bound and tube fed.” “Although A is unable to do anything for herself, she laughs a lot and lights up when Andrea comes into the room. It’s clear that they love each other very much.”

Freddie “Freddie is 6 years old and was diagnosed with myoclonus dystonia last year. Freddie is showing people that you can have a disability but still have great abilities.” “His largest run so far is 2.5 miles, without stopping. He has a huge amount of struggles but with the help of mum and dad we are challenging the disability and channelling his strengths.”

Matthew “Matthew has quadriplegic dystonia, he did have DBS (deep brain stimulation surgery) but it stopped being effective and was removed a few months ago. In 2022 he became the first person to run and complete the London Marathon on a framerunner.” “He’s constantly positive and looking for more goals to achieve. He never gives up even when he’s told he can’t do it, that usually makes him more determined to try!”

Sharon “Sharon has always been there for me and the rest of the group, she has given me lots of advice and helped me with information… An outstanding lady here to fight for more awareness.” “She has a lot of health issues, but she still keeps going.” “Sharon has tirelessly promoted awareness of dystonia to GPs and NHS professionals to seek better understanding and treatment for the condition.”