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.
NICE responds to concerns raised
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 arranges meeting with MPs to follow up Jacob Rees-Mogg’s call for debate.
TreatSMA are asking for those not eligible for Spinraza, to contact MPs and get involved in the debate.
Tickets are still available for this fantastic event.
Come and join us for a night of fun, family, community and celebration.
A Message from TreatSMA
Now that the new MAA has been released we wanted to share with you the process that we have gone through.
Spinraza access agreement extended to include more people
Dear community,
Please find below the official press release from NICE.