Recently, UCL held a family update webinar for NKH families to go over some of the more shareable aspects of the research (with a goal to provide hope and inspire fundraising). It’s always so interesting sitting in on these. We’re lucky in that we’re able to have conversations with Prof Nick about what’s happening behind the scenes, and whats upcoming, and it’s always nice when the research team is able to share with the wider community.
The most exciting for us is always going to be news about gene therapy for NKH. It’s the only treatment designed to help the underlying disorder, rather than just to treat the symptoms.
The team at UCL are following a strategy to develop gene therapy which aim to place a working copy of an NKH gene into the body, they have two projects on the in progress (the brain and liver gene therapy projects) which the Mikaere Foundation grants support.
We’ve had permission to share an update publicly, which you can read on The Mikaere Foundation website: https://mikaerefoundation.org/research-updates/
It’s not as in depth as the webinar update, and there is still a lot of good stuff happening behind the scenes, which hopefully we’ll be able to share at some point. We’re pretty pleased to be able to contribute best we can into moving NKH research and gene therapy forward.
Even better, we’ve just sent over an additional £10,000.00 this week. We’re a super small charity, so are incredibly grateful for the love and support that everyone has shown us, and STOKED that we’re able to send across another grant so soon after the last one.
We’re making change, hey? And we’re doing it transparently, with kindness. It’s really important to us that, as a charity we have integrity, and are kind and respectful to all our incredibly generous supporters. We can’t do this without you, so thank you for being in our corner. We appreciate you so much!
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