On the Van Hove Appeal

By 11th June 2018 No Comments

I’m not sure how to write about this. Prof. Van Hove’s research lab is set to close at the end of June due to funding issues.

This man has spent more than 15 years in NKH research. It’s his research that laid the foundation for the other NKH teams. He discovered, defined and proved the difference between variant NKH + classic NKH, solving the mystery of why some kids present so so differently and don’t have mutation in the NKH genes. He proved that taking DXM + SB earlier in life has a positive effect on outcome in his sibling study. He’s set to prove that NKH causes growth issues in the brain (as opposed to formation issues) which is hugely exciting (and the opposite to what most metabolic consultants thing).

He’s the doctor our metabolic consultants ask for help. He’s the person the NKH Research teams want to pick the brain of. Notre Dame worked with him in the beginning of their research group, inviting him to speak to their students. Prof. Nick Greene from UCL has said openly, several times that there is no person with more NKH knowledge than Prof. Van Hove.

He has also, over the years, amassed a metabolic network that is second to none. When speaking to Nick, he said that every time he makes a new contact in the metabolic community about NKH, they already know and are fond of Prof. Van Hove.

He’s worked hard, a lifetimes worth of work, with his sole focus being NKH. Which is odd, considering neither the Notre Dame team or the UCL team are focused on NKH (Notre Dame’s main focus is Malaria. UCL is at least closer with Neural Tube Defects, which share mutations in the GLDC gene).

I can’t believe he’s closing, and when I heard, my initial reaction was ‘what can I do?’

It turns out, quite a lot. Not alone, of course. Both NKH Crusaders and Joseph’s Goal were already moving to help – they’ve both set aside a small grant for Van Hove. It’s not enough to cover his costs till the next grant comes in (due Feb 2019). But, if they can get it matched from University of Colorado, that would put Van Hove short only $20k. If we were also able to get matching, then we’d need to supply $10k.

$10,000. That feels like a lot of zeros.

But here’s the thing – if we can’t raise the full amount to keep Van Hove going till the next grant comes in, there is no point. We’ll end up in the same situation again a few months down the road. If Van Hove closes before the grant comes in, then any money we send is essentially wasted.

That’s the fear of NKH Crusaders and Joseph’s Goal. If we don’t get enough to cover the entire year, if the University of Colorado is not able to match what we raise, then those extra funds will go to researchers not on the brink of closing.

So – it’s all or nothing. If we, as a community, can raise $10k, we can save Van Hove’s lab from closing. That’s it. $10,000 (well, actually only $9550 now, because we donated the entirety of our allocated donation savings to get things going). If I rationalise it into more manageable chunks, 191 families would need to donate $50 each to make that much. Now, there are almost 500 members of the NKH Q&A Community, so I’d need approximately 40% of them to donate.

Seems doable, right? So, we’re asking that each NKH family donate $50. Not to share on facebook, not to ask their friends or family (who have no doubt been asked time and time again for money) but us. This is our community. This is our researcher.

Now, not everyone has $50 to spare – I know. It’s a big ask to pull $50 out of your pocket. But you know what? As a fundraising goal, it’s really low.  Keep any eye out for a few more posts on how to fundraise later in the week.

Here is what I want to say – I want to keep the most knowledgable NKH man in NKH research. I don’t want Van Hove to close his lab. So, will you help? Will you donate $50?

US folk: https://www.facebook.com/donate/312802479252342/

UK/EU folk: https://mydonate.bt.com/fundraisers/vanhoveappeal

Help me turn the grid blue. For more information: http://fundnkhcure.com/

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