40 weeks since diagnosis it’s a quite a lot. Did we finally accept Inga’s disease? Rather not. But it is easier to think about SMA since there are so many good news about drugs that should be accepted soon. Unfortunately our last week euphoria about new drug subsided a bit – it is still uncertain […]

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 […]

Kochani – zapraszamy Was serdecznie już dziś i jutro do Obornik Śląskich na kolejną edycję Festiwalu Kultur Świata (http://www.festiwalhalika.pl/). Jak co roku zapowiadają się niezwykłe pokazy z całego świata, wspaniali ludzie, piękna okolica i smaczna kuchnia. Organizatorzy wspierają jednocześnie walkę naszej Ingusi z SMA, za co jesteśmy im ogromnie wdzięczni! WARTO WDEPNĄĆ! https://www.facebook.com/events/1494809287212483/

Thanks to everyone for your support! Special thanks to all those who donate our fight against SMA! Because of you we hope one day Inga will stand on her feet again. THANK YOU!!!

Weeks go by since diagnosis and we need to live our lives. Last weekend Inga had her “name day”. There were plenty of wishes. Most of them express everyone’s will Inga be healthy again. How important is to be healthy we clearly understand now. We would like to so much wish of being healthy comes […]