Following a few discussions and meetings between TreatSMA and MPs over the last few weeks today has seen the MPs debated the failure to provide Spinraza to all families who needed access.
Mary Glidon MP in an earlier debate used part of her speech to mention the debate and those needing access to Spinraza.
Then Sir John Hayes MP gave a moving case for the upset felt by families who originally thought they would get access but are now excluded (see above). We wanted to thank all families for contacting their MPs regarding this debate. As a small charity we need others to help to make access successful. You have all shown this by making this debate possible.
The TreatSMA community made this happen, you should be very proud.