On 6th March, TreatSMA along with many families and adults from the SMA community will once again travel to Manchester for the third appraisal meeting of nusinersen.
The third and what is set to be the final appraisal meeting for nusinersen is on the 6th March 2019 starting at about 1.30pm and ending at about 2.45pm. This will be taking place at the National Institute for Health and Care Excellence in Manchester.
TreatSMA, along with taking part in the appraisal meeting inside, will be holding a vigil outside for those who have passed away during the appraisal timeline and all others. It feels like this has gone on forever, but the fact the answer was not an easy “no” makes us believe that all the hard work by everyone involved has made a significant difference. This will be the third time that the community have attended en masse and made their feelings known to NICE while spreading awareness of SMA to the wider community. We have to make it clear that we will not be going anywhere, however long they decide to draw it out, whatever dates they use to clash with big things in the media. This community is watching you.
We ask that everyone who can join us does and if you cannot then possibly get a family member or friend to stand in your place.
We will start at 12.00pm and TreatSMA will supply hot drinks and snacks. Anyone needing financial help with travel or hotels please email Lucy at lucy.frost@treatsma.uk.
Hopefully we will see as many of the community, family and friends there as possible. We have to be heard, we have to be loud, and let the powers that be, know how much this means to us, to our children and to adults all living with SMA.
Please see below helpful links:
- http://changingplaces.uktoiletmap.org/find?toiletLocation=Manchester
- https://www.citytowermanchester.com
- https://www.networkrail.co.uk/stations/manchester-piccadilly/
Facebook Event – please show your interest in attending:
