Jake Oborne and family show the emotional impact being ineligible for treatment has on SMA sufferers. Click below to watch this powerful video.
TreatSMA are meeting with MPs to investigate ways to access Spinraza for those left out by the recently released MAA. Though the MAA is an important agreement, TreatSMA still view that even the best systems can make misjudgements on individual cases given the nature of these processes. Leading politicians including John Bercow, Speaker of the House of Commons, have been active in pushing for better access to Spinraza. TreatSMA are working with MPs to seek a debate on access to Spinraza.
Please see below a powerful video by Jake Ogborne highlighting the physical, emotional and mental impact it has had on himself and his family when they were told that Jake does not fit the current MAA criteria for Spinraza.