Author: Marni Smyth
AT LAST AN ADULT WITH SMA ON AN APPRAISAL COMMITTEE
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 SMA sat on the committee out of the drugs appraised so far. With access to…
If you or your child lives in England, has SMA type 3, and have lost the ability to walk, please respond to this survey.
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?
Physio with Marion – Physio in baths, hot tubs and swimming pools
Today Marion covered physio in baths, hot tubs and swimming pools.
Petition to Fund Spinraza for all SMA patients needs 10,000 signatures!
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…
Government release information on how to get support if you’re clinically extremely vulnerable to coronavirus
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…
UK Government release new guidance for Shielders
The UK Government have released new guidance for Shielders. You can read the new guidance here.
Shielders Have Some Questions for the UK Government.
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…
Physio with Marion – Infants and Babies
Today Marion discussed physio for Infants and Babies