On Friday 6th March, one of our patrons, Richard Brailsford met Witney MP, Charlie Maynard, and his team. The meeting was originally driven by the health inequality, which is administering Tofersen. A drug which affects 2% of the MND community with SOD-1 gene, and slows down or halts the progression of MND. Charlie has previously attended MND events at parliament. Despite his busy schedule, Charlie listened to updates on NHS support (or lack of currently) for Tofersen to be administered, NICE approval of Tofersen, MND Research Institute next period funding, and the MND APPG (All-Party Parliamentary Group) meetings. Richard also talked about an initiative called Artists Against MND (100% of revenue goes to our charity) and a local event called DukeFest.
We are are keen to embrace politicans of all parties and have worked with others, such as Ian Byrne (Chair of MND APPG). We would like to thank Charlie and his colleague Max for their time and support in raising MND awareness and fighting for health equality.
