Tag

fundraising

May 02
0

NKH Awareness Day – Help us cure NKH

By | #teammikaere | No Comments

It’s NKH Awareness Day today. I’ve been posting all week on facebook + instagram about NKH. Facts and trivia (as much as rare and terminal metabolic disorders can have trivia).

Here’s my ask: Instead of your usual flat white, please swap your coffee today for a donation. Please donate. Please donate. £3. £5. £15.

If donations aren’t your thing, please buy an Eva book (all royalties go to Joseph’s Goal). Please change your amazon smile charity of choice to Joseph’s Goal. Please change your profile picture on facebook to the NKH frame. Please share this post.

Today is the day, where once a year we as an NKH community make a big push. Our lives are hard – you know this. Not every family has the means or resources or support to fundraise, and so most families ask once a year, on this day.

Here’s what I can tell you. Your funds are making a difference. In the last year, there has:

  • Been the creation of zebra fish, mouse + worm NKH models. This is HUGE. Researchers can use these models to better understand how NKH works, at a much faster rate.
  • There has been progress in understanding how NKH works (in that it’s not *just* high glycine that causes issues, but also all the metabolic pathways that need molecules from the broken glycine system).
  • There has been progress in narrowing down which currently approved FDA drugs might work as a chaperone for NKH (this is also HUGE).
  • There has been signs that gene replacement therapy can be successful in mice (this is also SO HUGE, this is a CURE)
  • There has been research into replicating NKH into an algorithm for diagnostic use, which is HUGE and AMAZING and has the potential to help so many families.

There is more detail and more information that I can’t share, as it’s all unpublished and I’m being intentionally vague, but I want to share that progress is being made in NKH research. It’s progress that’s being funded by you.

For every £5 you’ve donated to Margot’s Marathon or Katy’s Run, or for every wine you’ve bought at a wine tasting, for every BV person who is doing Tough Mudder – you GUYS! You are paying for real research, real research that is underfunded, real research that has the potential to improve children’s lives dramatically.

So please donate today. Please go out and tell someone about NKH. Tell them about Mikaere. Organise a fundraiser in your office, a bake off, a poker match, a fun run. The stakes are small, and every single donation helps. Every single donation is funding research that will change lives.

Happy NKH Awareness Day. Thank you for being in our corner. We love you.

Oct 31
0

Running 31 Days in October

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Mick sits one desk across from Mikaere’s Grandad, and today marks the end of the unbelievable challenge he’s set himself. Mick ran every single day in October, on every single one of those 31 days. And he did it for #teamMikaere and NKH Research.

There’s something incredibly powerful about someone running for our son. Knowing Mick has been out every day, convincing himself out in all weathers for us – you guys. There is something so supportive, so genuinely heartfelt when your day to day is encouraging others to do hard, challenging things, to keep on keeping on.  From a recent post, he said “While getting out and doing this every day has been a challenge, it’s been great to have such variety – and of course when we think about why I’m doing it, the challenge I’ve given myself is nothing compared to the challenges others are forced to face every day. Hats off to #teamMikaere.”

The acknowledgement of our day to day, the support and the act – not just words or platitudes, but the physicality of running every day, committing to it, following through and fundraising an amazing amount – that has made a huge difference to how connected we feel. We feel seen. We feel heard. We feel like we’re not alone. We’re here with Kaikai, and we know that without fail, every day this month Mick has been out running for us. What a guy. Plus today, on his last run, he ran in fancy dress (!)

Mick has raised over £2k for NKH Research – a phenomenal amount of money. It works out to over £70 per run (blows your mind a bit, doesn’t it?)

I know we ask, repeatedly, over and over. But if ever there was a fundraiser to donate to, please donate to this one: justigiving.com/mick-holton

Thank you Mick. What an amazing month, what an amazing effort. We are genuinely appreciative of your support, and are glad you’re on #teamMikaere.

Oct 01
0

On the wine tasting

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Gosh, the wine tasting! We tried changing things up this year, but to be honest – this year’s wine tasting was a bit of a shambles. We were stretched in the weeks leading up to the wine tasting (having been away) and there was a bunch of things we didn’t do well (we forgot to ask for volunteers till the day before, we did it in the middle of the summer when most people were away, we gave everyone late notice etc etc) but despite the shambles, oh my days, what a great day.

This year instead of one giant tasting like a show, we had three small ‘stations’ where everyone stopped by as they went, with bubbles to start. It was a blind tasting, so each station had two wines, there was a Rosé station, a white station and a red station. Considering the heat of the day (thanks crazy heatwave) we did a chilled red (!) which was pretty fantastic. I obvs. loved the Rosé but I enjoyed the fizz and the chilled red too.

It was lovely to catch up with everyone as they came through – there was plenty of wine and we played a lot of ‘water vs wine’ (such a fun easy game). It was small, we intentionally kept the ticket sales small (and manageable!) but we had about 25 people come, we sold lots of wine and oh my days, there was lots of love.

On the day we raised £450 which is a phenomenal effort. Thanks to everyone who came and bought a ticket and drank our wine. Every single pound has such a profound affect on the research that can be done. All of those funds have been sent to Joseph’s Goal, who will send it along to Prof. Nick Greene for NKH Research. Honestly – thank you for the support for everyone who came with the crazy amount of love – thanks to you we’re making change. These funds – they give credence to what we’re doing, they give meaning to Mikaere’s life – he’s making a mark on the world with every single pound we raise in his name. I often mull over why we fundraise, and right now, that’s it. We want our son’s life to having meaning, to have made a difference. We want him to contribute to the world, and oh, how he is.

We’re lucky that we have this outlet in which to do that, so thank you for the love and support. You guys are the best x

Aug 10
1

On having the best of friends

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Good friends of ours (possibly some of my favourite people ever) live overseas. They’ve loved on us from a far and loved on Mikaere when they’re in London. A few weeks ago they hosted a murder mystery fundraiser for #teamMikaere. You guys – I’m jealous it wasn’t here because it looked absolutely AMAZING!

Phe and Dom hosted dinner for 10 of their (incredibly generous) friends. They did a short intro about Mikaere and why they were fundraising and holding a murder mystery event in lieu of running marathons or walking cross country like some of the other epic efforts (which made me laugh – I love they did an eating/drinking event. Phe and I once tried to run together and both of us I think decided walking was more our preferred pace).

Set in 1967 the Champagne Murders was accompanied with a very terrible fake Austin Powers DVD random clues and scripted characters. Apparently there was a lot of heated debate while they picked apart the clues and pointed fingers at each other as the potential murderer (which I also love – as a big Mafia/Secret Hilter fan I love a good Kangaroo Court!). With a lot of food and free-flowing booze their very generous friends raised a phenomenal 3,000QAR, which is roughly £633!

Isn’t that one of the most amazing things you’ve ever heard? I’m continuously overwhelmed with how our village has come together, and still does – months on, to fundraise for us and love on our family. So a big giant THANK YOU to Phe and Dom. We love you guys more than you know.

Jul 11
1

On Bar-b-kai 2: The Meat Returns

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After the wonderfulness of the Joseph’s Goal Ball, we packed up the next morning and high tailed it back to Bedforshire. Penny and Tony were throwing the second Bar-b-Kai, a BBQ fundraiser. They threw one last year, in aid of Team Mikaere, Joseph’s Goal and NKH Research. It was our very first fundraiser and it set the tone for our attitudes towards fundraising.

I’ll forever be grateful for Penny and Tony for showing us how easy it could be, how insanely possible fundraising was. We’re so lucky, genuinely, to be surrounded by people who love Mikaere, who are willing to throw fundraisers for research. Last year, that first BBQ showed us that we could fundraise. That we could raise money for research, that we could, without a doubt, make a difference. It was possible, it was easy and we could do it.

So when they were throwing a second BBQ? We were going to be there. So we drove straight from Wigan down, about a six hour journey with comfort breaks for Mikaere and arrived just in time. YOU GUYS! There was a ridiculous amount of meat (cooked to perfection, and some kind of delicious butternut chickpea curry concotion with I inhaled thirds of), there was a super fun raffle and the wine/water game was addictive success. A special shout out to The Chocolate Deli in Worcester, who donated a beautiful chocolate hive which went up for raffle. It was very oh la!

We ate, we drank, we caught up and everyone loved on Kaikai. It was a lovely, lovely night. I’m so glad we were able to be there. In total they raised a ridiculous £1,200, which honestly – it makes me teary to think about how generous everyone was. Thank you, again, to Penny and Tony – you both have been so gracious to our little family.

Loved it. Charity BBQ’s are the best.

Jul 06
0

On The Joseph’s Goal Ball

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Joseph’s Goal – it’s the NKH charity that we’ve got behind. If you follow us at all, you know this. We talk about them all the time.

Part of the reason is because we’ve spent so much time with Emma, Paul and Joe. We spent an entire morning with them last year, when we were just getting into the world of NKH, and they were so kind. I helped with the conference website last year, getting another speaker on the line up. We spent time together in Boston, the only two UK families who came over, we definitely stuck together. We had meals and I took every opportunity to love on baby Tom. Sam and I got into belly laughs when he was telling me about a guy that fell asleep with a burger in his hand (I love that that’s where his humour is at right now, it’s the best!)

We trust Emma and Paul and their trustees to make the best possible decisions with the funds we raise. We know their values are line with ours, which is why we’re two feet all in with Joseph’s Goal. Joe’s goal is our goal.

So when we found out they were doing the annual JG ball, we drove up to Wigan (near Manchester) to go. Woah. Buddy. Not only was traffic the craziest, but with Mikaere in his not quite perfect car seat and the vomiting (oh my days the vomiting) – it was a mission.

As an example: we arrived at the hotel the same time the ball started (we’d planned to arrive three – four hours beforehand…fail). We checked in, in a room that was three floors up and down a warren of hallways that wasn’t super accessible. We luckily had a very helpful bellboy help us up with our gear. We got Mikaere out of his buggy, and no joke, he was down two seconds on the beautifully white bedspread before he projectile vomited. There was vomit everywhere.

We rang down to reception, and they offered us an easier to access room. So Sam bathed Mikaere, our wonderful bellboy came back to help me move our gear and when we were finally ensconced in the new room, we were only and hour and a half late.

We dressed at lightening speed, fed Mikaere a reduced feed, put him in a shirt and ear defenders, and showed up two hours late to the ball.

I have never been more triumphant about getting somewhere in my life.

There is nothing like being in a giant room surrounded by people who have so much love for NKH kids, and who are throwing THOUSANDS of pounds at research. It was a giant room of love.

It was great to see Emma and Joe again, and also Nick Greene and his family were there too (the Greene family are an absolute delight by the way). I was surprised that bar Joe, Mikaere was the only other NKH kid there (knowing how supportive the community is).  Emma said that predominantly, for the ball it’s the local community that as rallied behind them (which is super amazing). And they weren’t wrong – there were a lot of famous footballers there, there were a lot of local businesses who had donated prizes and were bidding on all sorts.

I quite enjoyed bidding – I learnt quick to bid early because I was always, without fail going to be bidded over. My budget didn’t stretch nearly as far as some others. Sam did better than me, and got into a bidding war in the silent auction for a signed boxing glove.

It was a phenomenal night. Once there we had a great time. We were glad to finally get to sleep and breakfast at the hotel was a real treat. Side note: it really bothered me the breakfast room wasn’t accessible. We had to carry Kai’s buggy down the stairs. What would we have done if he was too heavy to lift?! Boo to inaccessible rooms as standard.

All in all it was a great night. I’m glad we went. It makes such a difference to know we’re not alone in this life, and there are others pushing towards funding for a cure too.

          

 

Jul 02
1

On all the amazing fundraising goodness

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Hey you guys, we’ve been a bit absent lately. I’m not going to apologise for that, really. Life happened. The short of it is that I tried to do too much in one go and now I’m paying the price, but that’s okay because the outcome is that we hit the Van Hove Appeal goal! We raised $10,394 and absolutely SMASHED that $10k goal!

It was a pretty ambitious goal, to be honest. $10k is a huge, huge amount.  So thank you for everyone who donated in the name of #teamMikaere – we saw so many familiar names come through with donations, so many people we know and love – so thank you. You guys were a strong catalyst for pushing us forward. I’m not even kidding, 53 of the blue squares (each with a donation of $50 or more) were bought by #teamMikaere supporters. That’s a whopping 29% of all the squares, and while we were facilitating the campaign, this success honestly belongs to you and to the NKH community which rallied beautifully to the cause.

Now, I know that $10k doesn’t seem like much, but it makes all the difference. Unfortunately this amount won’t be matched by the University of Colorado like we had originally hoped. We tried working with them, but they’re a state funded school and can’t release the funds for Van Hove.

But we spent a lot of time working out a plan with Kristin from the NKH Crusaders and Emma from Josephs Goal, and we have a plan:

Van Hove needs $120k to keep his lab open from July 2018 – July 2019:

– NKH Crusaders has committed $25k upfront now, and a $15k grant early in 2019, with the second payment in partnership with the Nora Jane Almany Foundation.
– Joseph’s Goal has also committed $25k upfront, with a second payment of $15k in early 2019.
– The community has raised $10k with the Van Hove Appeal
– Les Petits Bourdons are sending $12k
– Hope for NKH is sending an additional $5k.
– Prof. Van Hove has gained the support of a fellow who will send $15k.

That’s $92k now with $30k to come. A whopping $122k all up. We’ve done it. We’ve raised enough money to keep Prof. Van Hove in NKH Research. That’s INCREDIBLY amazing. He’s the nicest of guys, literally one of the most knowledgable on NKH – and he is responsive to parents. That is HUGE. We’re grateful he’s still in research, we’re grateful he’s got funding for the next year.

In terms of more general fundraising, we’ve done really well, recently.

With Josie, Margot + Chris running their marathons (in Istanbul, London + Edinburgh respectively), Adam riding from London to Paris, with the corporate support from Infinis, the charity Art Exhibition… you guys, we’ve hit in £69,575.88 raised in the last year and a half. I’m blown away by the support and love people have shown towards Team Mikaere because you GUYS – that is a ridiculous number. Side note: the VH appeal is not even included in that number!)

Here is what I know about that number – that huge giant number was made predominantly of tiny tiny donations. Small little donations add up, and that number? We’re well on our way to our £100k goal. That’s a year worth of research right there.

With that in mind – we’re having another wine tasting! Are you in London and free on the afternoon of 22nd of July? We’re doing another wine tasting – this time with a twist! Less sitting down, and more interactive goodness, moving from table to table. Tasting wine, with pairings and wine facts and riddles and games. All proceeds go to Joseph’s Goal and NKH Research (obvs).  It’s in Putney (SW15 1SZ), tickets are £20 and available from here: https://bit.ly/wineforkai2

Please come drink wine with us. It’s going to be amazing.

Jun 11
1

On the Van Hove Appeal

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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/

May 14
1

On meeting Prof. Nick Greene

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We’re really lucky to live in London. One of the best cities in the world, for sure. One of the benefits is that it’s in this city you’ll find UCL, one of the main centres of research for gene therapy (a large chunk of the research done in the gene therapy community comes out of UCL). Conveniently it’s the centre Prof. Nick Greene is based at while he’s working on an NKH treatment. This means he’s in the best possible place in terms of the knowledge available to his team – they benefit from the knowledge the other teams are working on. Very exciting.

Even better for us, UCL is attached to our specialist hospital. So when we went in for Mikaere’s metabolic check, we met Nick for a coffee.

You guys – there is so much going on in the world of NKH research. In terms of understanding the development of NKH in unborn children, understanding the wider implications of NKH and the knock on effects into the one carbon folate system, making cell models, looking at treatments (like the components that make up cinnamon!) into bigger cures, like gene replacement therapy in mice. There is lots happening, a lot of moving parts. Very very exciting.

It’s inspiring, meeting Nick (who is the nicest guy, for sure) literally made me want to throw more money at research. Because that’s it, right? The more money the more research.

I talk a lot about fundraising. I ask over and over for donations, constantly putting my hand out (and I’m so grateful for the love and grace shown to me, you guys are the kindest and most generous friends we could have) – but what it really comes down to is I have the deepest hope that in Mikaere’s lifetime NKH will be a thing of the past. That there will be an effective treatment and future babies and families won’t have it like our kids do now. That our babies won’t die.

Now, that’s a lot of pressure to put on people like Nick, but to talk to him and have him discuss where they are right now and where they are going? It gives me hope.

When we met it was a beautiful day in London. Even better, Mikaere was on good form. He was sitting and talking and very awake and aware and interested in the world around him. I know the researchers don’t always get to see the day to day life of kids with the condition they’re researching (at least not in NKH. In NKH they’re still in mouse model stage) so it was a nice moment for Nick to meet Mikaere again. To see how well he’s doing, the development he’s making.

It was such a nice afternoon. I love that I live in a city where I can meet the guy trying to cure my sons terminal condition for a coffee. What a world, hey?

May 02
1

On NKH Awareness Day 2018

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Today, May 2nd is NKH Awareness Day. I’m guessing that as you all are reading this, and you’re following along on IG or FB, you know what NKH is. You know that Mikaere has it, and you know it’s nothing something I’d wish on anyone.

For those of you that are new to #TeamMikaere – hi! Welcome! NKH stands for Nonketotic Hyperglycinemia and it’s a genetic metabolic disorder that means Mikaere can’t process glycine. Glycine is neurotransmitter and toxic levels in the brain mean severe developmental delay, seizures, feeding difficulties and highly medicalised life. It’s also terminal. Womp. You can find out more about NKH at foundationnkh.org

Rubbish, hey? Wouldn’t wish it on anyone. But along with the grief and pain and suffering, there are moments of joy. Kai is well loved. Not just by us, but you guys have been overwhelmingly supportive. We’re genuinely grateful for all the love our little guy has received from the world over. You guys are the best.

We’re asking that today, on NKH Awareness Day you skip your morning starbucks and donate £3 towards research. If you’re in the UK you can text – “NKHC50 £3” to 70070. If you’re not in the UK, you can donate at www.bit.ly/nkhcure

If donating is not your thing, there are other things you can do:

  1. Tell someone about NKH. Tell them about Kai, and what it’s like and how rare it is. Tell them we’re fundraising for a cure.
  2. Practice saying Nonketotic Hyperglycinemia. It’s what NKH stands for. Or, if you’re really feeling fancy, give Glycine Encephalopathy a go.
  3. Help us turn facebook yellow and update your facebook profile picture with a yellow banner here (desktop only – sorry!) and a facebook cover photo here  (or visit fundnkhcure.com for both!)
  4. Purchase an Eva the Adventurer book. Less than £5 and royalties go to NKH Research