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.
SMA New Today recently published the following information from the Jewelfish trial.
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.
Following the miscommunication from NICE in terms of releasing information TreatSMA, Spinal Muscular Atrophy UK and Muscular Dystrophy UK contacted NICE to express our unhappiness with the communications sent out. We have now received a response which you can read below.
TreatSMA are asking for those not eligible for Spinraza, to contact MPs and get involved in the debate.
Come and join us for a night of fun, family, community and celebration.