Tag

fundraising

Apr 25
1

On a fundraising update

By | #teammikaere | No Comments

We as a little family have a fundraising target, aiming to raise £100k for NKH Research.

Thanks to you guys we’re currently at a whopping £53k (and counting!) – and that’s the truth, the bit that it’s thanks to you guys. Most of our fundraising has happened through other people, people who have held bbqs or cake morning’s or run a marathon. Small, easy things that have added up.

So I wanted to update you really quick on what’s going on:

1. The Eva Books!

I will forever love you guys for helping me translate the Eva books and even more for buying them! I’m still working my way through the translations but there is a whopping 15 Eva books available on Amazon. Eva is available in 15 different languages. Well, I say that, but she’s actually bilingual (all the translations have the English *and* the translation, for bilingual families). Like this:

 

 

Additionally, I was able to send off the first royalty donation this month, a whopping £430 went to Joseph’s Goal. Considering each book makes just over a £1 in royalty fees, I’m pretty happy with that.

If you haven’t got your copy yet, you can buy it from booksforwednesdays.com

PS – THANK YOU to everyone who has sent in a picture of their kid with an Eva book – you guys are the best!

2. #IFHNKH Tee’s

Did you see my previous post about the amazing IFHNKH tee’s?? I won’t rehash it, but I’m pleased to say we’ve sold a BUNCH of them – if I had shelves stocked I’d say they’re flying off (buuut thanks to the wonders of dropshipping, I thankfully don’t need to store shirts. They’re printed and shipped on demand, right after your purchase goes through. Best thing ever, hey?)

I just wanted to say thanks to everyone who had bought one. Each of these tee’s has a small margin on them and you know that small margin is going straight to NKH Research. Oh yeah!

If you want one, they’re available right in the teammikaere.com/shop  If you’ve bought one – send me a selfie! I want to see you in your #ifhnkh shirts! x

PS – I’m still trying to figure out a decent dropshipping for the US. Will keep you posted!

3. BV Love for the phenomenal Adam

Adam, (who, prepare yourself for a throwback: having just the company, joined Sam on the last day of his ridiculous 72 mile walk along the Thames Path AND was on the winning Charity Quiz team) is riding from London to Paris. On a bicycle. 243 miles (did any else just cringe?)

Honestly, we’re so grateful that he’s doing this, so grateful that he’s raising funds for Joseph’s Goal and #teamMikaere, we’re genuinely blown away by the support. What a stand up guy, hey?

If you’re on of the #OTOD BV family and you’d like to #bgenerous – Please donate to Adams ridiculously amazing event at justgiving.com/fundraising/lonparmikaere

 

4. Kiwi Cross Crew Love for the phenomenal Margot

Margot I met at a ridiculous French Party when I first moved to London. She’s one of the most genuine, most lovely people I know and last weekend she ran her SECOND marathon for #teamMikaere (having just run the Berlin Marathon for us last September) – this time in London. She’s set a goal to raise £1k for Josephs Goal and #teamMikaere – and SMASHED IT.

At the risk of repeating myself, we’re so grateful for the love and support shown by Margot. Fun fact, she was the first person to ever babysit Mikaere. We were so pleased that she was running for #teamMikaere, we printed a London Marathon shirt, just for her.

If you fancy highfiving her, you can donate to her campaign: justgiving.com/fundraising/margot-knight

5. Fancy helping us fundraising?

We can’t raise these funds without you. We’ve asked everyone for cash over and over and our social circles are saturated (sorry about that). But what we can ask is if you could help us – could you organise a bag pack at your local supermarket? Could you put us down as your local cause at your nearest Waitrose? Could you do a cake morning at work, 50p per slice? Or a raffle? Or a BBQ one weekend, or anything. Whatever floats your boat.

Because here’s the thing – for every £5 we raise that’s £5 towards a cure for Mikaere. There is so little funding… it costs well over £300k to run a research lab for a year, and it’s managed between grants and fundraising by people like us.

We have hope in a future only because we know the only thing between us and a cure is money. So set the bar low, if you could help us raise £20, £50, £100 – it adds up and it makes a difference. Please help us give Mikaere a future. We can’t do it without you guys.

Apr 16
1

On the Art Exhibition

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Mikaere’s Grandma is in an Art Group. Earlier in the year they ran an exhibition, where a percentage of sales would go towards NKH Research, and they would collect donations, run a tombola and have a coffee/cake morning.

Well. What an AMAZING event!

We arrived late in the day. It was one of those snowy beast from the east days, and the weather was horrific. We half expected the morning to be moderately busy and the Hall to be empty by the time we finally got there. Except when we walked in and with an hour left to go, the hall was PACKED. Loads of people were still there, drinking coffee, viewing the art. It was phenomenal. We even managed to purchase a piece before everything closed down, and as always we enjoyed the visits and talks. We can’t help but feel the village community is behind us.

We found out after that the event raised over a whopping £1600. We’re so grateful that entire groups of people come together to support us. All of the money raised at the event goes directly to Joseph’s Goal, which in turn goes towards NKH Research.

So thank you to everyone who came. Thank you to Toddington Methodist for donating the space, the Toddington and Westoning Art Group for running the exhibition, for donating a portion of your sales, for selling cards and coffee and donating cakes, for running the Tombola and for helping set up and take down. Thank you to everyone who came and donated, who bought a painting or ate some cake.

Thank you everyone for the love and support. We’re overwhelming grateful, really we are. It hits home when we realise we’re not alone in this fight. That there are others that care about Mikaere, and about us, enough to help run events like this. We feel like the only thing between us and a future with our baby is money (which is infuriating, right?) so when a group of people – some who we hadn’t met – pull together an Art Exhibition like this – overwhelmed with gratitude doesn’t even cover it. We feel loved and so fortunate that there are so many people on #teamMikaere.

So thank you to the Toddington and Westoning Art Group – you guys are the best.

PS – if you’d like to fundraise with us – let us know. It doesn’t have to be a big event like an art exhibition, but could be something simple like a fun run, or a bbq or picnic. If you can throw a dinner party, you can throw a fundraiser. Help us raise money for charity?

Apr 09
1

On the #ifhnkh Tees!

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There’s an acronym that NKH parents use when we’re struggling. IFHNKH. Short for I fucking hate NKH. Typically used when our kids are struggling and in pain and there’s nothing we can do. That feeling of helplessness and rage and just… I hate NKH. I really do. It’s a horrific disorder, and it’s caused us no end of grief with Mikaere. When there are no words left to say, IFHNKH is it.

So, I put it on a t-shirt. And now you can BUY that t-shirt (in a number of different colourways), with a small portion going towards NKH Research. (Take that NKH).

If you want one, they’re available right in the teammikaere.com/shop

And while this won’t make much sense to a lot of you – this one is for our NKH family. For the other mamas who are in hospital with their babe, who are facing surgery’s and seizures and vomiting. For all the mama’s whose babes have passed. For all the mamas who are struggling with all the shit that comes with NKH – this one is for you. I’m with you. #IFHNKH

Side note: I also threw together a ‘Perfectly Imperfect’ and a ‘Beautifully Broken and Perfectly Made’ Tees for our beautifully perfect kids with their teeny tiny imperfect genetic mishaps, which is also in the shop.

Note – these drop ship from the UK, shipping to the US is available but the conversion is done with PayPal and I have no idea how that magic works. I’m trying to find an appropriate vendor to drop ship in the US to make it cheaper, so stay tuned!

Note 2 – each of these tee’s has a small margin on them. You know that small margin is going straight to NKH Research. Oh yeah!

Note 3 – Do any men want to see #ifhnkh on a shirt? If you do, let me know. I’ll make it happen for you.

Note 4 – YOU GUYS! These shirts are going crazy! Thanks to everyone who has bought one – if you have, send me a selfie, I want to see you in your #ifhnkh shirts!!

Mar 02
0

On The Charity Quiz

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I feel like we’ve got a few charity fundraisers under our belts now, but the quiz was one of my favourites – a proper good fundraising event. People came, we had a great time, we made lots of money for NKH Research.

It was a fantastic afternoon. We had two fab quiz masters (thanks Tony and Tess!) – who provided several rounds of hilarity. Some questions required some thinking but there was enough knowledge in the room that the questions could be answered (because there’s nothing worst than a quiz where you can’t answer any questions). There was a round about music, and pictures with landmarks and general knowledge. Lots of delicious pop culture questions (I’m no good at knowing the answers but I still enjoyed those rounds the best).

We even had a round about Mikaere and NKH – because how better to raising awareness about a rare disorder than making people answer questions about it? I did a bit of a spiel at the beginning of the quiz and later pulled all my questions from that content. However, there was a slight blunder when I gave an answer in a question. Faaaaail. Quiz master I’m not. It was great though, people were kind when I messed up. They also must have been paying attention, because most teams got all the questions right! High five for awareness, hey?

We had a great turn out, maybe 40-50 people? I love fundraisers, if only because our nearest and dearest make the effort to come and support all the things. It also meant that since the Quiz Mastering was taken care of by Tony + Tess, the bar by Sam + our friend Gareth managed the bar, once I’d got the food sorted (which was nothing fancy – mini cheese boards and pizza pinwheels, one for each table, assembled not even by me but by helpers (thanks Hari and Becky!!) I got to sit with Mikaere and chat. Full, proper conversations, with adults, actual friends, with nowhere else to be. (Isolation: it’s a thing). I drank my full of social goodness, it was amazing. So many wonderful people came – we’re blessed. Seriously.

Thank you to everyone who came. You guys are the best. We’re also thankful to Chris and Majestic Wines in Putney for helping with the wine/beer. We’re grateful and even more grateful to the people who bought it (it made for a very cherry winter afternoon).

Thanks to everyone who donated the prizes and the items for the raffles. Thank you to Tony and Tess for organising and for the generosity of everyone on the day. We managed to raise £1450 on the night, which will be matched (!!!) to a total of £2900. Not bad for an afternoon, hey?

These funds are all going to Joseph’s Goal to help towards NKH Research, and the gene therapy work done by Prof. Nick Greene in progress at UCL.

We’re so hopeful for a gene therapy cure. Thanks everyone who came for helping with that hope – we love you guys. What an amazing afternoon. Stay tuned for more fundraisers throughout the year. We’re thinking the next one should be a wine tasting – who’s in?

Jan 22
1

On honesty in fundraising

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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.

Jan 09
1

Happening Next Week! Charity Pub Quiz

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The first week of 2018 is over (so quickly already!) and we’re gearing back up into the world of medical appointments and therapies and all sorts. We’re also having our first charity event of the year – Let’s Get Quizzical. It’s a pub quiz (!) and it’s going to be amazing.

We’ve got two stand up folks (the phenomenal Tony and Tess) who are clever, insanely hilarious and understand that the fun part of the pub quiz is being able to answer at least some of the questions. We’ve got spot prizes and raffles and some fun time hampers. There will be snacks, and wine and beer available for a small donation. It’s going to be a great afternoon, and an easy way to spend a Saturday.

I’m super looking forward to it (though don’t you worry, while I enjoy pub quizzes I’m fairly rubbish at them. Your competition in me is light at best!)

Teams of 8 can book an entire table at the event for £100 which can either be booked online here or you can contact Tony, Tess, Sam or Elly directly. If you can’t get a full team together, book a single ticket for £15 and we can organise you into a team on the day.

It’s going to be grand. All proceeds on the day go to Joseph’s Goal – we’re relentless in funding a cure for NKH (Non-Ketotic Hyperglycinemia). Every small bit helps, and every pound brings us closer to a cure for Mikaere.

Buy Ticket Now

Buy a ticket, and come join us. It’s going to be amazing.

Dec 08
1

Introducing Eva

By | #teammikaere | 2 Comments

After months of PDF proof’s and double checking all the things, worrying over languages and trims and printing quality (most of which I have zero control over…) I’m pleased to announce that Eva The Adventurer is now available. And she’s beautiful.

When publishing a book, there were a few things that were important to us. The first was that any royalties support #teamMikaere, Joseph’s Goal and NKH Research. We’re all aligned with what we want – a cure for NKH Research. Specifically, a successful clinical trial for gene therapy in the GLDC gene (and, eventually the AMT gene) currently in progress by Prof. Nick Greene of UCL. We’re so so close, and we know with certainty that the more funds we can send his way the faster the progression. So being as transparent as possible, we get a royalty of around £1 a book. We’re sending that £1 to Joseph’s Goal, who will send it on to the team at UCL. Every book sold is literally helping us fund a cure for NKH. We’re determined.

The second was that our books support diversity. That includes ignoring a few standard gender stereotypes. Our princess is more likely to save herself than wait for her prince. She’s into doing all the things, not just the ones typically reserved for boys.

We’ve also tried to include more diversity within the representations of our characters. So yes, there are some blue-eyed blonde lovelies. And some Asian, redhead, black, coffee coloured beauties too. In our next book, we’re going to try to include those of different religions, too. It’s important that our little ones can see themselves in the literature around them.

The third was that Eva is (at this point) available in a whopping FIVE languages: English, Dutch, French, German and Spanish.  We have Swedish and Serbian in progress and a bucketload of others in the works. It was really important to me that the books were bilingual. We’ve tried to find so many books in English *and* Te Reo, but I think I’ve found a total of one. Womp. Sharing the love of languages and learning is absolutely a priority – so Eva the Adventurer is bilingual. And any future books will also, fingers crossed, be bilingual.

We’ve been really really lucky that so many people have given their time and energy to help us translate. All the translations (and translation checks!) were done by volunteers. So thank you – everyone, genuinely. If you left your name on the translation, you’ll get credit. Your name will be all fancy on the cover along with mine, and you’ll be credited on the amazon listing (which means you’ll be able to search your name on Amazon… it was still novel the first twenty times I searched my name).

So, if you’d like to support NKH please buy a book (they’re all less than £5, unless you’re in the states. In which case Amazon makes you charge stupid amounts for it, I got it as low as I could at $9.95!)

Buy an Eva Book

Thank you to everyone who has contributed, who cheered us on and loved us while we weather the ups and downs of NKH. You guys are the best x

Nov 24
2

On Eva

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I wanted to take a break from sharing our illness woes for a minute (we’re still in the trenches!) – since we’ve been housebound I’ve had some time to move a few projects along during nap time. One idea was a charity children’s book, where all profits go towards NKH Research. So I made it happen. It’s been a few months in the works, wrestling with illustrator and trying to simplify text.

You guys, meet Eva:

She’s the star of the charity book and she is *awesome*. She’s an adventurer, who fancies being more than a princess. She has a huge imagination and wears a dress and still does all the cool things. (Gender stereotypes were never my forte).

One of the things I wanted to do was make sure it was available in all sorts of languages, I wanted this book to be bilingual. And thanks to several volunteer translators (thanks you guys!! You’re the best!), Eva and her book will be in THIRTY TWO other languages! I’m so pleased, and grateful to everyone who stepped up and helped translate my little book into something more. (If you’d like to help translate into a language you speak natively, let me know! All languages welcome).

Even more exciting is this week I got the very first proof of the English version back! I was super excited to see it in book form!

It looks ace in physical form. I’m so pleased that a project that was just floating in my head is finally coming together. I’m hoping a few versions will be available on Amazon before Christmas. Keep an eye out okay?

NKH – were coming for you. We’ll fund a cure one way or another.

Oct 18
0

Kai’s First Birthday Party

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On Saturday we had Kai’s first birthday party. It was amazing!! We went with a super hero theme, it seemed appropriate. We invited a few friends down to our local cafe we’re we’d booked a room. We had decorations and bunting. I spent a lot of time trying to convince people to help us eat all the candy at the Candy Bar (too much candy is never a terrible problem to have) or to help us eat the cake (again: too much cake, possibly the BEST problem to have).

Kai, unfortunately had a bit of a down day and ended up sleeping through his party, but we had a great time. There were lots of people we adore and hadn’t seen in a while. Special shout out to Ben and his family who came. Ben is another NKH kid, and it was AMAZING to have you guys come up to see us!! It was also super nice to have the Duff Club back together for a bit too (heart you guys for staying late and helping us clear out – you guys are the best!).

Thanks to everyone who came, we had a lovely time. I’m glad we managed to celebrate. 

Here’s the other thing. This birthday marks a year of fundraising for an NKH Cure. We support Joseph’s Goal and Prof. Nick Greene with UCL. Of course we do. They’re the closest to a cure. They have mouse models and are pursuing treatments that would affect a large proportion of the NKK population, not a select few. Fundraising for a cure seemed like the best way forward for Kai’s long term future.

Except that now… now that Kai is much older his disabilities are more pronounced. He needs more support, and to be frank: the NHS is sorely underfunded. The conservative government is still pursuing austerity measures that are absolutely affecting the most vulnerable of us – those cuts have meant services pulled back for Kai. We’ve rallied and are paying out of pocket for what we can (like weekly physio sessions and bath equipment so Kai can bathe safely), and are talking to charities about funding others (like a lyrcra DMO suit to help prevent scoliosis and weekly osteo sessions and additional medical equipment like syringes and NG tubes).

Recently we came across two treatments we think will help Kai – they’ve both already had outstanding results in other children with NKH. We hope that with them, Kai will have a chance at hitting some of those developmental milestones we’ve missed (like head holding, sitting, and if we’re really getting our hopes up, walking and talking).

The first is Quantum Reflex Integration with Low Level Laser Therapy. It’s done at home, and requires the purchase of a laser (which costs up to £5000). This treatment will hopefully help with some of those developmental issues.

The second is Neurofeedback Therapy – this is done at a local clinic in Battersea. Neurofeedback uses an EEG to assess Kai’s brainwaves, and the therapy provides sensory feedback (with music or vibrating cuddly toys), to encourage a more stable brainwave pattern. We hope this help with raising Kai’s seizure threshold, hopefully reducing the number of seizures he has. To be effective, it’s been suggested we do at least 20 sessions, which will cost up to £1600.

Two treatments we think would be game changing for Kai that we can’t afford to pay for ourselves. How heartbreaking is that? That there are things that could help Kai that are denied to him because of something stupid like money?

And so for us it makes sense to stop, temporarily, fundraising for Joseph’s Goal and to start fundraising directly for Kai and what Kai needs.

We know we’re asking a lot, but we can’t afford these treatments out of pocket. It’s especially hard to see other children having success with these treatments and not be able to do the same for Kai.

So. We’ve switched our focus from Kai’s long term needs (like a cure from Prof. Nick Greene) to his short term needs (QRI LLLT and Neurofeedback Therapy).

And I know we ask often, and we ask a lot. We plan to hold a lot of fundraisers in the next few months to help us, so keep an eye out for those. But if you’re able: please donate something for Kai’s Birthday. Anything would be very much appreciated.

 

Donate for life changing treatment for Kai

As always, we know we’re asking a lot. So thank you to everyone who has already donated, thanks to everyone who has already helped. We’re really grateful to have such a supportive village around us. You guys are the best. We love you!

x

Oct 09
1

The Garden Party

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We’re so lucky to have the kind of extended family we do. Kai’s Grandparents, Great Aunts + Uncles and Great Grandparents threw Kai a Garden Party fundraiser. It was AMAZING.

There were all sorts of stalls. Cake and pimms, Bric-a-brac, Cards, tombola. Sam’s Great Aunty Sal had made all sorts of Jams and Chutney (a few jars even made their way back to our pantry!). There was a raffle for the luxury hamper (very oh la!) and there was a whole table of knitware. Blankets, and toys and scarves. It was beautiful.

I myself made Wine Lanterns from empty wine bottles, and candles from the ends. It was quite fun, but candles in glass votives were not as easy as I thought they were (wet spots are the worst!). There were also cards, and #teammikaere bracelets, and Joseph’s Goal bands. It was lovely.

We had a fab turn out, so many people came by despite the rain. I love Toddington, there is such a community there. We’re really lucky to be part of it by extension. So many people came to talk to us, to hear about Kai and say hello.

It was an amazing, amazing weekend. We raised a ridiculous amount (over £2000!!!) for NKH Research. We’re so humbled to have so many people care about our little family, happy to partake.  It was such an amazing day, really it was.

I was exhausted at the end, and really struggled. I’m an introvert by nature, and it had been a long week of meeting people and not being at home (which I both enjoyed and struggled with, it’s such a delight to have family around who love on Kai so much, but introvert). Towards the end of the day I pretty much crashed and took myself off to bed early! Too much excitement, hey?

Still, again – thank you to everyone who came out. Thank you to everyone who came to manage the stalls (we love you!), to everyone who donated something (we love you!) and to everyone who came out on the day and bought something (we love you!)