Dystonia Awareness Week – 3rd-11th May

 Dystonia is a neurological movement disorder that causes uncontrollable muscle spasms which can be extremely painful for some. Dystonia is estimated to affect 100,000 people in the UK, and there is no cure. To recognise Dystonia Awareness Week 2022, we asked friends of Leigh Network to share their stories. Faye’s Story: “To look at me,…

International Wheelchair Day

See the PERSON, NOT the wheelchair. This International Wheelchair Day, let’s raise awareness of wheelchair users! Faye has a blog called Access Champion where she shares her experiences at various venues and discusses their wheelchair accessibleness. Give it a read and share with us your experiences of being a wheelchair user! Get in touch via…

Random Act of Kindness Day

Random Act of Kindness Day 2022❤️ A day celebrated across the world where people are encouraged to make a ‘ random act of kindness,’ here are some ideas for you: – Smile at a stranger – Pay someone a compliment – Give up your seat for someone on the bus – Tell someone you love…

Research is happening

Around the world mitochondrial disease research is taking place. We’ve been honoured to take part in Leigh syndrome discussions with doctors and mito professionals from around the globe. It was truly inspiring to hear their passion and energy about Mito and their patients. Leigh network is proud to support the Newcastle welcome trust Leigh syndrome…

The Mito Cocktail

This is the medication I take everyday, 20 of these tablets are taken in the morning and I tend to choke on them with juice so I have them now with a thickened drink. The mito cocktail is a cocktail is a mixture of vitamins, pain relief medication and any symptom management. It is tailored…

Faye’s 5k!

IMG_0629 I did it! 🤩 I who have mitochondrial disease, encompassing: fatigue, muscle weakness, dystonia, aphasia, blindness and no treatments, completed a 5k bike ride! 🚴 I never thought achieving something like this would be possible but with the support of wheels for all, it was. On about lap 8, my muscles were starting to…