We are really excited and pleased to inform you that our very own Trustee, Andi, who has SMA type 2 has been chosen to sit on the panel for NICE appraisal of Risdiplam. Andi will be the first adult with…
As you know our mission is treatment for all, and we have continued this fight by exposing Cambridge University Hospitals of their continued age discrimination against those with Spinal Muscular Atrophy. Equal access to health is the very tenant of the NHS yet CUH seem to feel otherwise.
Cambridge University Hospitals (CUH) is regarded as one of the most reputable medical institutions worldwide and provides specialist services to many conditions nationally and internationally, including being a Neuromuscular Centre of Excellence as awarded by MDUK. Therefore, it begs the question, why, when the FDA, MHRA and most other Neuromuscular Centres across the country are prescribing risdiplam to patients of all ages, does CUH feel able to have a different opinion to all of these experts?
If NICE recommends next year that England’s Managed Access Agreement for nusinersen should change to include you / your child, would you want to access this treatment?
In this session Marion talks about all of the different ways you can use that you can use different types of equipment for different types of exercise.
Today Marion covered physio in baths, hot tubs and swimming pools.
Dear Community, Earlier today we were contacted by Labour MP Kerry McCarthy on behalf of her constituent and SMA community member Jake Ogborne. Jake and his family have started the petition 'Fund Spinraza for all SMA patients on the NHS'. As…
The government have released information on how to get support. You can access it here. You can use this service to: get access to priority supermarket deliveries ask for someone to contact you about any local support that’s available update…