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First New Zealander on Tofersen: Newshub interview with Jimmy

Personal Stories, Treatments

17 April 2024

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This week TV3's Newshub shared a piece on Jimmy King, the first New Zealander with MND to access Tofersen. Tofersen is an investigational drug developed by Biogen to treat SOD1-type MND.

Read more and watch the news segment, here:

In people of European descent, SOD1 gene mutations cause about 15-30% of MND cases with a family history (familial) and about 2% of MND cases with no known family history (sporadic). SOD1 gene mutations are the most common genetic cause of MND in people of Asian descent. It is estimated that 10 to 15 people living with MND in New Zealand have the SOD1 mutation.

Biogen has announced an early access program that eligible patients can apply to. To be eligible you must have been diagnosed with MND caused by a SOD1 gene mutation. You can request testing for this gene by your neurologist or pay to be tested in private. However, this treatment may not be suitable for everyone, and individuals should discuss this treatment with their neurologists or physicians.

Read the latest on Tofersen, here:

Thank you, Jimmy and Brooke, for sharing your story with MND and the impact of this drug on your whānau, and thank you to journalist Amanda Gillies for shining a light on MND 💙

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