Biogen has announced that SPINRAZA (nusinersen) – a first-of-its-kind medicine – is the first medicine funded by Pharmac for Spinal Muscular Atrophy (SMA), the number one cause of genetic death in Kiwi children under two.
SMA is a rare genetic disease that can have a devastating and life-changing impact. In its severe forms, SMA can cause paralysis and difficulty with the most basic functions of life, like breathing and swallowing,3 with babies and children possibly unable to hit major motor milestones like rolling, sitting, crawling, standing, or walking.
Joe spoke to Fiona Tolich a long-term campaigner and advocate for SMA, and a Trustee of Patient Voice Aotearoa, about how significant this is.
Thee Hybrid Rose phones up for a kōrero with Zoë about ULTRAKUNT - the three volume release of her absolutely stunning 5th studio album HyperKunt, featuring remixes galore and a glorious Nightcore E.P.! It's out December 16 - RUN don't walk. Whakarongo mai nei, baby.
For years, politicians and scientists have been talking about a future of migration caused by climate change. In Fiji this migration has already begun. The question is now how to exactly do it.
Daniel spoke with Merewalesi Yee who is pursuing a PHD at the university of Queensland in Brisban Australia. Her project seeks to understand human migration in Fiji caused by climate change and the role of mobility in climate change adaptation.
Leba Gaunavinaka is a climate change adaption specialist at the Fijian ministry of climate change. She helped creating the plan that tries to tackle one of the most urgent problems of the climate crisis: how to relocate communities whose land is soon inhabitable.
Joe speaks to Fiona Tolich, long-term campaigner and advocate for SMA, about Pharmacs funding of SPINRAZA, a first-of-its-kind medicine for Spinal Muscular Atrophy (SMA), the number one cause of genetic death in Kiwi children under two.
Daniel speaks to Merewalesi Yee, who is a PhD student at the University of Queensland in Brisbane, Australia about her project that seeks to advance the understanding of human migration in Fiji caused by climate change. He also speaks to Leba Gaunavinaka who is a climate change adaptation specialist at the Fijian Ministry of Climate Change about relocating Fijian communities whose land is inhabitable due to climate change.
David chats to Shane Henderson for our regular segment, City Counselling. They look at Auckland Council Group’s Annual Budget 2023/2024. David also speaks to Lachlan Keating from Deaf Aotearoa about creating NZ Sign Language videos for the 2023 census.