May 2nd is NKH Awareness Day! We're asking for folks to swap their starbucks coffee today and instead donate £3 to NKH Research.
Nonketotic Hyperglycinemia (NKH) is a rare, genetic metabolic disorder. Less than 40 children live with it in the UK, less than 500 world wide. It's terminal, and the treatment options are limited.
We're raising money for NKH researchers, who are making real strides towards a cure. However, because NKH is so rare, there isn't a lot of awareness and there isn't a lot of funds.
So, please share. Please donate. It means a future for our kids.
For NKH families:
After meeting our NKH researchers – Dr Nick Greene + Prof. Van Hove, it’s been made clear that funds for research is low. Once the funds are used, that’s it – no more NKH research.
We’ve made so much momentum – with Dr Nick Greene looking at gene therapy, and Prof. Van Hove exploring chaperone therapy - now is not the time to slow down. We're finally making gains, real, genuine gains. An NKH cure is in our future - we just need to help our experts get there
There are around 250 NKH families in our community, we’re asking each family to donate $50, for a total of $12,500 towards NKH research. We as a community can do this.
In the early days so many of us go flat our and raise money but once we've asked all our friends and family, we ease off. So how can we all help without pestering our extended contacts who have already given? Simple, we reach to our own pockets. We are proposing a $50 challenge to each and EVERY NKH family.
Most of us have $50 right? But what if we don't? Give what you can, $10 here, and ask ask 4 close family members for $10 each.
If we have approximately 300 families and another few hundred extended family members, this once a year $50 challenge will really make a difference.
Please don't shy away, stop thinking about how you can help and just help. We're all in this together. We can absolutely smash this.