Hansard official record of the House of Commons debate on Spinal Muscular Atrophy has now been issued.
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.
Today is the day that MPs debate Spinraza access. Please find information below as well as a press package that we would urge everybody to forward to their MPs or press contacts.
Thanks to some individual MPs and families within their constituencies raising the subject of access to Spinraza again in the commons, TreatSMA have met last week with those MPs to voice our concerns over the MAA for ineligible patients.
Jake Ogborne and TreatSMA visited the Houses of Parliament to meet with Jacob Rees-Mogg to highlight his and others’ need for treatment.
The core team at TreatSMA, met on Saturday 13th July to discuss ongoing activities into accessing treatment for SMA and also to discuss our future plans.
Jake Oborne and family show the emotional impact being ineligible for treatment has on SMA sufferers. Click below to watch this powerful video.