Sander Breinholt Duun fra Frederiksberg er udvalgt til banebrydende behandling med Spinraza

En ny behandling kan blive banebrydende for patienter med muskelsvind. Det kan få stor betydning for 5-årige Sander Breinholt Duun fra Frederiksberg. Det skal gøre mine muskler stærkere.

Material by Muskelsvindfonden

Vi kan allured se en lille forskel

SMA Stories: Life on Hold

Ola Schrøder Røyset says: Personally I have been prepared for a Spinraza no for almost six months. Ergo, no hope. Spinraza is the first possible treatment for me. What I’m waiting for is a cure. It is not far away. If you read the reasoning to the Decision Forum, you will see that you argue that the price will go down as new treatments come on the market. Currently, it is approximately one million kroner per dose, and three doses are required per year. These doses are placed in the spinal cord, and work on about 60 percent of those who receive it. The remaining have minimal to no effect.

Everyone points to others and nobody takes responsibility.
The treatments that are now awaiting final assessment are the treatment of AveXis (only one dose for life), Astellas (multiple dose treatment), Trophos (multiple dose nerve treatment), and Novartis (multiple dose regeneration).

These are true words and that’s what we say all the time. Waiting for the new generation of SMA therapies, they are a thousand times more promising than Spinraza. Thanks to Norway for these fat words

If you understand Norwegian, please read the full new post ”Sjuende far i husethere

We don’t want to discuss about Spinraza anymore. It’s a tiring topic with never ending story.

Let’s look positively into a new future and wait for the next SMA therapies. Maybe then they will be affordable for Scandinavia

Parents’ experiences of the care of their child with spinal muscular atrophy type 1 & 2

To examine how parents of children living with spinal muscular atrophy (SMA) type 1-2, and parents who have lost their children in SMA type 1-2 experienced health care during the child’s illness.

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