A Big Thank You and Fond Farewell to Dedicated Trustee
It is with great sadness we announce the departure of Kacper from the TreatSMA team.
Excitement as adult community member receives first Spinraza loading dose!
“When treatment was discussed in January and after the assessment was carried out I felt pleased but with the current situation (COVID-19) I thought it would never happen until I received the phone call telling me that it was going ahead and they had spaces at the RVI to do the treatment.”
TreatSMA’s 80’s Disco – A Celebration of Carers Week 2020
Join us in a celebration of Carers Week 2020!
Results are in for TreatSMA’s Great Lockdown Bake-off!
Results are in! Thank you to everyone who entered TreatSMA’s Great Lockdown Bake-off 2020. Everyone’s entries were truly amazing – guest judge Tom Herbert had a tough job on his hands picking a winner.
MHRA action taken to halt sales of fingerprick coronavirus (COVID-19) antibody test kits
MHRA have taken action to halt the sales of fingerprick antibody tests for coronavirus (COVID-19), utilising capillary bloody, due to concerns regarding reliability.
Physio with Marion Episode 10 – Pain
Another great session with Marion, this week focusing on pain and talking about spine and hips.
Physio with Marion Episode 9 – All about therabands
TreatSMA hosted another Physio with Marion session on Sunday, and thanks to Marion and all of those who took part in asking questions. This week Marion focused on exercising with therabands.
Nusinersen patient Q&As
Patient organisations have asked for NICE and NHS to answer a few very important questions with regards to MAA and access to Nusinersen. We are now able to share their answers in the attached documents. We will continue to push for expanded access for this treatment to make sure that everybody gets a chance.