Seventeen weeks… Seventeen hard weeks. Weeks when we were thinking almost only about Inga’s future. We wish we could forget about SMA, about her illness. Forget for at least one day…. To see her having strong legs, running across meadow and picking flowers… We wish we could see her stop, squat to pick the flower and standing back without any special effort… Our dreams are so vivid… But still they are only dreams… Will they ever come true?

Biogen and Ionis Pharmaceuticals have recently issued several updates on the clinical development of nusinersen, an antisense drug designed to treat spinal muscular atrophy (SMA). http://smanewstoday.com/2016/06/07/biogen-and-ionis-release-spring-2016-community-update/

Next weekend The Annual SMA Conference will take place in USA. It is the largest SMA conference in the world. Through the conference, organisers bring together researchers, healthcare professionals, and families to network, learn, and collaborate. We hope next pharmaceutical companies will share their achievements in SMA drug invention process.

Last week Inga got new physiotherapy table. It is similar to one Inga use while she exercise with Mrs. Ewa. It’s really comfortable and physiotherapy seems to be less difficult to do. We thank everyone who helped us buy that tab

le!