MP drop-in, House of Commons on 25th February 2019
First and foremost we would like to thank MDUK and SMAUK for organising the drop-in event for MPs, particularly at such short notice.
On more personal note, despite the efforts put in by the organising parties, the low attendance number has left me disappointed and frustrated regarding our fight for SPINRAZA FOR ALL. A number of MPs came into the room, the majority just to have their photo snapped in front of the MDUK and SMA UK campaign board, obviously self-publicity.
Barely a handful of MPs showed an interest or actually spoke to some of us with genuine concern/support! I would like to say a personal thank you to Eleanor Smith, Mary Glindon and Will Quince MPs. Unfortunately, my local member was amongst the many “no show” invitees.
With too much apathy surrounding approval here… the emphasis needs to be our responsibility, or to encourage any representatives, families, friends, colleagues, to attend the Manchester protest Spinraza For All next Wednesday.
Financial assistance can be provided – many thanks to two thoughtful and considerate Anonymous Donors 🙂
Please feel free to contact me if you have any questions at all: dawn.wilbur@treatsma.uk.
Happy days!
Dawn (TreatSMA type 2/3 representative)
