Last year I got blasted on Facebook when a family were fundraising for an item that didn’t do what they said it did. I got really excited when they said this item helped reduce the frequency of seizures. When I asked about it, it turned out it’s just a sensory toy and has no effect at all on seizure activity.
Maybe my moral compass is a bit more north than other people’s, but when it was clear it didn’t do what they said it did I very politely suggested they change the description to be more accurate. Needless to say that suggestion was followed with a lot of name calling and sarcastic bs. I stopped following the thread after the second stupid comment and left the keyboard warriors to it.
It’s a tricky thing, because I feel like when we fundraise it’s so so so important we’re transparent and honest. That when we come to you, our family and friends to ask for help – it’s important to us that you trust us. That we’re as transparent as we can possibly be. We’re so grateful for the love and support and the donations and I want you to know we respect and are grateful for every donation given.
Because of that, we always try to be very clear where your donation is going.
When we say the proceeds are going to Joseph’s Goal for NKH research they are. They’re delivered directly to Joseph’s Goal via justgiving or mydonate (if giftaid is available) or straight to their bank account if gift aid is not.
When we say they’re going to Mikaere, they are. We have a bank account that’s set aside for his therapy costs and it’s only used for what we said it would be (in this case neurofeedback therapy and QRI/LLL therapy) and that’s it. Your money goes where we said it would, no if’s or buts about it.
When we choose therapies to fundraise for, it’s because we’ve spent so much time researching through half a dozen different options for the ones that will provide the most benefit for Mikaere. Reading endless papers and articles and reviews to make sure there is some evidence that supports the benefits, that the risks are minimal, if not nonexistent. So when we say we’re fundraising for neurofeedback therapy and QRI/LLL therapy – it’s because we’ve done the ground work and there are case studies and research that suggest it’ll help.
Even if some of it seems a bit woo-woo. It’s at least woo-woo with some nice evidence based research to back it up.
What we will never do is lie about what the therapy does. If it does not help with seizures we will not say it does. If its not scientifically backed we will not say it is (though, let’s be honest. This is us. All of Kai’s therapy is scientifically backed!)
It’s important to us that we’re honest. Any donation you make goes exactly where we’ve said it will, to therapies that are evidence based and (will hopefully!) help what we’ve said they will.
We raised over £50,000 last year. We don’t have exact numbers, but a good guess would be about £53,589.50
£49,620.50 went to Joseph’s Goal. We get a spreadsheet every month with a breakdown of how much they’ve received, and from what campaign.
Joseph’s Goal sent £85,000 to Nick Greene and his team last year, which will be used towards gene therapy specifically for NKH. Isn’t that amazing?
It’s been a huge confidence booster that our fundraising has helped. That we’ve had a direct affect on the research that can be done. It feels like we’re helping. Like we’re doing something. Like we’re not taking NKH lying down. It gives us hope.
We’ve raised approximately £3970 to go towards Kai’s therapies. That’s not a small amount, hey. That’s quality of life changing stuff. We’re using the first of it for the LLLT laser, closely followed by neurofeedback therapy (due to start after that pesky gastrostomy comes through).
Most of all I just want to say thank you. Thank you for trusting us, thank you for the help and the love and support. Thank you for everyone that’s bought an Eva book, ran an event, or donated to Kai’s campaign. Thank you everyone who has bought a ticket to the Charity Quiz and came for the fun.
We couldn’t have raised this much money without you. We couldn’t have made such a positive change in the research that can be done with NKH without you.
You guys give us hope. Thank for the love. You guys are the best.