Recently, acting as part of TreatSMA, Gary McKie (trustee) asked the community if anyone had a panthera chair that a young North East family could loan, to keep their sons arm strength up, as his consultant had recommended sourcing a manual chair.
Biogen UK has released new community statement with regards to access to Spinraza in the UK. TreatSMA, SMAUK and MDUK have asked important questions and this statement provides some insight in the process and what to expect.
In celebration of the approval of Spinraza the Annabelle Rose Foundation organised a party called the Cirque du Spinraza where many of the community attended on Saturday.
TreatSMA visited Roche yesterday to talk about Risdiplam and how we can support them through the approval and appraisal process.
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.