Another week has just gone by… Very happy one: Biogen and Ionis Pharmaceuticals announced that SPINRAZA (nusinersen) – an investigational treatment for spinal muscular atrophy (SMA) – met the primary endpoint at the Phase 3 study evaluating SPINRAZA in later-onset (consistent with Type 2) SMA. The analysis found that children receiving SPINRAZA experienced a highly statistically significant improvement in motor function compared to those who did not receive treatment. It means that very soon there’s gonna be treatment for our Inga. We just need to wait months – not years!
http://www.curesma.org/…/biogen-ionis-cherish-interim-analy…
Last week Inga was in hospital for sleep study. Doctors wanted to check if there is any reason to support Inga’s breath system. We are happy to write that everything went fine – there were only few moments of apnoea. But it does not affect her health and we do not need to think about respirator for now. Inga was very brave, she slept well although she had many wires applied to her body. Bravo Inga!
And Inga’s brother – Max – has just turned 9 years old 
😉
