This week Biogen (pharmaceutical company who made SMA drug already approved in USA) has been answering questions asked by EMA (European Medical Agency). We have been waiting with bated breath for any news about drug to be approved in Europe. But unfortunately decision hasn’t been made… We are running out of time… Next EMA meeting […]
As the weeks go by we do not stop doing physiotherapy. Inga doesn’t remember her life before “Age of Rehabilitation”, so bravely suffers daily activities. Standing frame, walking in splints with the walker, massage, stretching… It takes together more than 3 hours a day. We believe so much in a salutary effects of exercises, because […]
Inga learns to walk in splints and with a walker. This is a huge effort for her, but also a great joy. She hasn’t walked for almost a year now (around April 2016 she stopped to walk and stand). Leg splints are great, they makes her legs boned so she can lift her whole body […]
This week we have celebrated Rare Diseases Day. We didn’t know that there are over 7 thousands types of rare diseases, mainly with genetic background. Worldwide 350 million people suffer from these diseases. It’s hard for us to imagine that – so many suffer and pain… SMA has stopped to be rare disease for us […]
Yesterday on TV, in the newspaper today – Inga is fighting for her health leading massive media campaign.
About SMA and Inga’s fight against disease in Polish TV.