TreatSMA exclusive webinar with respiratory expert Dr John Bach
A couple of weeks ago we had the honour of hosting Dr John Bach for an exclusive webinar looking at how to manage the respiratory system of SMA sufferers.
Roche release new data on infants, children and adults
Roche have released new data which shows that Risdiplam significantly improves motor function after 24 months in people between the ages of 2 and 25 years, this includes both type 2 and type 3 patients. In addition the data also shows that after 12 months of patients previously treated he continues to show a rapid and sustained increase in SMN protein levels.
Further Clarity on Access to Compassionate Use Program for Risdiplam.
We have received further clarity statement from the NHS England Clinical Panel for nusinersen with regards to access compassionate program for Risdiplam.
Spinraza – Access for Adults FAQs
NICE and NHS have provided FAQs on adults accessing Spinraza.
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.