House of Commons debate
Hansard official record of the House of Commons debate on Spinal Muscular Atrophy has now been issued.
MPs debate Spinraza access and changes to NICE appraisal processes
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.
MPs debate access to Spinraza TODAY!
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.
MPs to debate access to Spinraza on Thursday 25th July
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.
Risdiplam Raising SMN Levels in Older Patients in Ways That Seem Durable, Researcher Says of Early Trial Data
SMA New Today recently published the following information from the Jewelfish trial.
Jake and TreatSMA take campaign to the Houses of Parliament
Jake Ogborne and TreatSMA visited the Houses of Parliament to meet with Jacob Rees-Mogg to highlight his and others’ need for treatment.
Team TreatSMA meet to discuss ongoing access to 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.
Family makes emotional video about the impact the new MAA criteria
Jake Oborne and family show the emotional impact being ineligible for treatment has on SMA sufferers. Click below to watch this powerful video.