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…
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 many of you know, non-ambulant type 3 patients fall outside of the current MAA criteria…
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 your details – for example, your address You can register yourself, or on behalf of…
The UK Government have released new guidance for Shielders. You can read the new guidance here.
TreatSMA helped Shielders get their voices heard about the new shielding policies. Many shielders have been left with so many ‘What If’s’! We are calling on the government to give more support to those who need and want to shield! We are also thankful to Tiger Twins for allowing us to use their music on…
