Man with spinal muscular atrophy calls for funded treatment to be extended to adults
Ryan O'Rourke is urging access to spinal muscular atrophy treatment for adults, warning that delays risk permanent loss of function.
Ryan O'Rourke missed out on funded treatment for spinal muscular atrophy by six months and is now experiencing declining hand function. He is calling for the treatment to be extended to adults, emphasising that each month of delay risks permanent loss of physical capability that may not be recoverable.
Covered byStuffNot covered byRNZNZ Herald1NewsNewstalk ZBOtago Daily TimesNewsroomThe SpinoffBusinessDeskinterest.co.nz
Coverage across the news outlets we track, as at publication.
What outlets are saying
Stuff
Ryan missed funded treatment by six months, now he’s losing use of his hands
Ryan O’Rourke is calling for treatment for spinal muscular atrophy to be extended to adults, warning that every month of delay risks function he may never regain.