Congratulations to Magnus, he will be treat with Spinraza in another country

In his own country (Denmark), he was denied access to the only treatment for spinal muscular atrophy.

Now having the parents a positive message. Her son Magnus 17 years old is being treated with Spinraza in Belgium. He has now received the 2 injection via lumbar puncture. He feels already the first improvements into the legs.

With Spinraza can treated adults as well. Countries like Germany have for all SMA types approved without age limit.

Latest study from Germany show. Spinraza works in children and adults

Latest results from the evaluation of Children with SMA Type 1 Under Treatment with Nusinersen within the EAP in Germany

7 kommentarer

  1. Congratulations to Magnus and family. 👍 Is it good that he already feels the first progress after the second injection. Usually one says after the magic fifth injection, one could feel something, here it seems to be different!

    Nevertheless, is it a sad victory. The country had fail miserably, organizations have become powerless against a state that is increasingly failing in health policy. No matter if it is for rare diseases or in the social area.

  2. Agree with Nils
    🙏 Congrats to the whole family, especially to Magnus. Make to continue good progress.
    Sad but true. As a consequence, I would leave this country and stay in touch with Belgium.
    I would save myself the high taxes 🤔

  3. Glückwunsch an die Familie für diesen persönlichen Sieg. Wünsche dir viel Glück & Erfolg für die weitere Zukunft. 🍀

    Es ist traurig das der Staat Dänemark die Familie in Stich ließ. Da tröstet auch die Entscheidung nicht wo am 30 Mai getroffen werden soll! All das hätte nicht sein müssen.

  4. Mia

    Großen Respekt an die Familie die nach dem letzten Strohhalm greifen. Hoffendlich können sie die Therapie dauerhaft sichern, falls der dänische Staat weiterhin die Therapie blockiert.

  5. Liz Andersson

    Nils says:
    Usually one says after the magic fifth injection, one could feel something, here it seems to be different!

    That’s correct what you say Nils. 😉

    In Germany, a health insurance company wanted to have a prognosis after the saturation phase (4 injections) in order to ensure further reimbursement for the future.

    Statement from the University Hospital in Cologne on insurance.

    Prognosis after 4th injection and treatment is not possible at all.
    Only after a longer treatment , we speak from the 6-7 injection, more about it in our internal area.. 😉

  6. Somewhere I read that the father came from Colorado. Why does not the family therefore treat the boy in America. He has the right!

    Is correct what you say Nils and Liz.
    The condition and muscle strength does not come immediately after an injection, it takes some injections. My legs benefit most of it, especially the right one. I feel only after the 7 injection an improvement. I must now to motivate *this muscle* to become stronger.

  7. Liz Andersson

    Magnus got his fourth Spinraza dose. The 5 injection he gets in October 2018, where is not yet known. Magnus’s family is trying to get him into the EAP program in europe.

    Progress: Before Magnus got the #4 dose, used a physiotherapist the Hammersmith functional motor score. This is a special measurement for muscle diseases

    His values: From zero > 6 – Highest is 96

    He feels more strength in his hips and shoulders, he can move his foot.

    A great result, we crosses our fingers for a happy ending 🤞💓

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