Tag

fundraising

Mar 06
0

On the Research

By | #teammikaere | No Comments

After that Deepmind post, lots of people reached out for an update on what *was* happening in the world of NKH Research in London, and I thought I’d share. It’s important to know that the money we’re raising is having a huge effect on the research done here in the UK.  While I can’t speak for the other researchers (Dr Van Hove or Dr Katsuri Halder specifically), I do feel it’s important to note THERE IS RESEARCH happening (despite what that recent article by the Clemson World Magazine would have you believe).

There is A LOT of research happening, and it’s my genuine belief that Prof. Nick is the closest to meaningful clinical trial, with a treatment that will effect the most kids.  But I’m getting ahead of myself.

Essentially, the team under Prof. Nick Greene is trying to do two things:
1 – understand more about how NKH works, and the effects it has
2 – discover potential treatments for NKH

 

Goal 1: Understand more about how NKH works, and the effects it has

There’s so much we don’t know – the carbon folate system (within which the glycine cleavage system lives) is really really complex. There are hundreds of amino acids – glycine included – which are split and joined and run through so many different processes. Super complex. Have you seen what that looks like? Here it is:

Source: Prof. Nick Greene, UCL

Truth: we don’t fully understand the how the whole system works, or all the roles glycine plays. This means it’s even harder to understand the knock on effects in a child with NKH. In the last year or so, Prof. Nick and his team have been using mass spectrometry (a really fancy science-y way to measure amino acids as they are processed) to follow glycine, and around 900 other different molecules in the brain and liver at different stages of NKH. They’ve been doing this in two different models – mice models, and in little cell samples grown from patients with NKH.

They’ve followed literally thousands of metabolic pathways. I had no idea that glycine went on to do so many things. It even joins up with other amino acids, like hexanoylglycine or propionylglycine or N-octagoylglycine (there are so, so many more). With excess levels of glycine, you can bet that all these other amino acids also have excess levels, which causes a knock on effect.

This small project alone – identifying all the metabolic pathways of glycine – costs £50-100k per year, but here’s the thing – they know more than they ever have before about NKH, giving insight into what’s happening with our kids. This is huge! It also speeds up the process, because it gives the research team clues about where in the process a treatment might work best. Knowing that means a faster route to clinical trials.

Which is everything – obviously we all want a safe and effective treatment for NKH. Which brings us to the treatment section.

 

Goal 2: Discover potential treatments for NKH

To get the treatment from research to people with NKH is a bit of a process.

First, they need to show ‘proof of concept’ in a mouse model. Nick has three mouse models.

Two are gene trap models, which means they can turn the GLDC gene on and off (with magic science). One model completely prevents GLDC gene expression, and the other allows approximately 10% of the GLDC gene expression, which allows the range of symptoms we see in NKH. The third is a missense model, which has the exact same mutation as a child living with NKH. This isn’t a gene they can turn on and off, these mice have NKH in the same way as our kids do.

Prof. Nick has two treatment projects at this ‘proof of concept’ stage. It’s very very exciting. They’re both in gene therapy – what this means is he’d like to place a working gene into a cell that is currently has a broken gene (thanks to an NKH mutation).  What that means is the cell will be able to produce a stable protein, which brings the whole glycine cleavage system up online. Hallelujah! Also, to clarify, this is an effective treatment for EVERY child with a mutation in that gene. Whether it’s a missense mutation or a deletion.

The tricky bit is getting the gene into the cell. They use fancy technology called vectors, which are actually viruses with the bad stuff taken out (it’s kind of like hijacking our immune system. Viruses attach to our cells, depositing the bad stuff that makes us sick. Our body fights them off, and writes a little reminder of how to avoid that particular virus in our genes). Instead of depositing bad stuff, the virus will deposit a working gene!

None of this is new, by the way. Nick’s team are working on it, and have been working on it for the last three years – which is so important for people to know. There’s a charity that’s fundraising millions to REPEAT this work that’s already been done. If you’re in the community you’ll know who, and I suspect the reason they’re doing it is so they can direct the clinical trial specifically to their kids, but for me, it feels like a waste of money, repeating existing research.

I don’t want to fundraise (which is really really hard work, btw) to have existing research replicated. I want to fundraise for the team that’s going to get to clinical trial the fastest, which bluntly, is Prof. Nick’s team. It’s why we support Joseph’s Goal, as the only charity that supports Prof. Nick.

Now, Prof. Nick’s team don’t have gene replacement therapy down yet. They’re exploring with two different vectors – AAV vectors to target the brain and lentiviral vectors to target the liver (AAV + Lentiveral are just different kinds of viruses. Like say the man flu + regular flu!). There are many questions – which is the best vector to use? Is one enough, just the brain or just the liver? Do they need to do both at the same time? Will it work? Will it be safe?

This is why they need to a do a proof of concept. They have the mouse model ready to go (a huge undertaking in itself) but it’s going to cost roughly ~£2.5 million to get through to clinical trials, and around 2-3 years, if they’re funded, and if the safety and ethical regulators who patrol this type of work are kind.

Speaking of, the second step in getting treatment to clinical trial is the safety step. The team needs to show that the treatment is able to be ‘produced’ at a scale appropriate for patients the world over (meaning, safe for humans. It’s what they call ‘clinical grade’). It requires plenty of safety studies to demonstrate this.

Prof. Nick’s team have another project to do small molecule work that is almost at this point. ‘Small molecule work’ sounds very high level science – but the idea is that there will be a pill (or powder?) of some sort that might be more effective, or might have less side effects (we hope!) than the existing treatments (aka, Sodium Benzoate). The study they’ve done in the mice has been very very positive, and everyone is cautiously optimistic.

Nick is currently talking to regulators about what kind safety studies they would need to do to get to this point. He’ll need a study to confirm it’s effective (costing ~£35K), and another study to check for long-term safety/possible side effects (costing another ~£30k) which might take 12-18 months. He’ll also need to find a clinical grade (read: safe!) version of the medication to test in the trials.

Then, the third step is to go to a clinical trial. May it happen sooner rather than later.

So, in summary Prof Nicks team are:

  • Using mass spectrometry (and other tests) to follow glycine around the body and understand what happens when there is too much glycine
  • Trialling two different vectors (one of the liver, one for the brain) in gene replacement therapy as a treatment option
  • Trialling small molecule work as a possible alternative to sodium benzoate.

It seems crazy to me that a proper, effective treatment (gene replacement therapy) is less than £3 million. That all that’s standing between us and a significantly improved quality of life is MONEY. It’s also not even that far out of reach, is it? If every person in  London donated a £1, we’d have the funds three times over.

So. We fundraise. You know we’re fundraising. We’re cutting our hair. We’re eating chicken nuggets. We’re doing an NKH Race Night. We might raise between £5k – £6k between those three fundraisers (which awkwardly all happen on the same two days).

That’s approximately 2% of whats needed, but I genuinely feel like at least I’m making the effort. I’m trying. With all the desperation of a special needs mama who wants a future with her son. I’m two feet all in, desperately trying to fundraise. This past week we managed to raise almost £8k with our fundraisers that happened across the weekend. A mere drop in the ocean. Hey ho, onwards we go.

Mar 04
0

On the Chicken Nugget Challenge!

By | #teammikaere | No Comments

Well. That was A LOT harder than most people thought!! Originally we set it up because we wanted to do a challenge that was a bit more inclusive. Our last one was running, which isn’t everyones bag. It’s also London based, which isn’t ideal.  The chicken nugget challenge seemed like such a good idea!!

And it was, until I hit the 30th nugget and wasn’t interested in eating anymore. You guys – 30 nuggets is A LOT of nuggets. That we’d even asked people to eat 50 just seemed ridiculous. (Having looked into in the run up, I saw that people had eaten 50, but didn’t take into account how difficult it was).

We had 23 people join in, 9 teams, across two different countries in 5 different cities/towns. We collectively raised over £2500 for NKH Research!

Well done us! Proof:

If you want to donate, you can at: https://www.justgiving.com/team/nkhchickennuggetchallenge

Again, thank you to everyone who took in the challenge. THANK YOU to everyone who donated and sent kind words. You guys are the best, and we’re grateful!!

——

A bit about NKH and where all our funds go:

We’re raising money for NKH Research. Nonketotic Hyperglycinemea (NKH) is a rare and terminal metabolic disorder that affects children. It means they can’t process glycine, which is a neurotransmitter. Toxic levels of glycine cause the neurones to overfire and die, causing brain damage.

This is shown as seizures, severe global developmental delay (delays in physical, intellectual and social development), low tone, causes children to be severely disabled.

Joseph’s Goal supports Prof Nick Greene at UCL in London, who is working on gene replacement therapy – a treatment which would radically improve the quality of life of kids with NKH.

Because NKH is so rare and is funded by families, every single penny helps. Every single pound raised has a tangible effect on what can be done. The funds raised by families last year sped up research by 18 months – this is significant, when 80% of children with NKH don’t see their first birthday.

We support Joseph’s Goal specifically because they are the only NKH charity supporting Prof Nick Greene, who we genuinely believe is the closest to a clinical trial, and therefore an effective treatment for Mikaere.

Mar 02
0

On the Head Shave

By | Dear Kai | No Comments

WELL.  We hit £5,000 in our fundraiser, here: www.justgiving.com/gareth-shave

So it was bound to happen, this head shaving business. I was nervous to begin with (because seriously: people have very strong ideas and gender norms/stereotypes around women and hair – I know this because several people tried to convince me NOT to shave my head – shame on them!) and I wasn’t sure how I would feel about shaving my hair. If I’m completely honest, I was mostly nervous about what my husband would think!

I hadn’t cut my hair since Feb 2014. It was long – mermaid length. Gareth, six foot ginger ninja stopped cutting his hair in 2015, back when he became a nomad. He has beautifully long, curly, red hair that makes him look a bit homeless when he doesn’t style it.

We agreed, one night over beers, that if we raised a certain amount for NKH Research, we’d shave it all off. Turns out our thresholds were quite low!

1. If we reached £1500, Elly and Gareth would both get number 2’s

2. If we reached £3000, Elly and Gareth would use razors, and be completely, 100% bald up top. (This turned out to be impossible, so we listened to the advice of the barbers and used the closest clippers we could possibly get).

3. If we reached £5000, Gareth would ALSO shave off his beard. Woah buddy!

Gareth and I did it together.  We donated all our locks to charity, so they can be donated into wigs (thats nice) and we held hands as our heads were shaved. Oh. My. Days!

I was unprepared for how freeing it would feel, and actually, how nice having your head shaved is (like a head massage, but nicer!)  Afterwards, my head was cold (I felt every single draft, even in a room with all the windows closed!) but I was surprised at how much I LOVED it! It feels incredibly tactile, and I can’t stop touching it.

So here we go – shaved head.  Thanks to everyone who donated, who cheered us on while we did it. Thank you to my partner in crime – Gareth – for shaving off his hair + beard with me, and for organising the barber from Flame and Steel (flamesteel.co.uk), who very kindly donated his time. I’m grateful! Thank you to every single person who donated.  Genuinely, thank you.

And I know I say it all the time – this thanking business – but I genuinely am. I’m beyond desperate for a cure for Mikaere. His seizures are daily. His vomits are awful. His quality of life is not even close to what we enjoy. When I go to bed at night, I’m not 100% sure that everything will be fine in the morning. That Mikaere will be with us, that he’ll be happy and able to move through his day. We live with uncertainty and grief and THE ONLY solution, the only long term, positive solution is research.

I have all my hope in the research. That it might, in Mikaere’s lifetime, be able to help him live a better life.

So with that desperation in mind, every donation feels personal. It brings us closer to a future with our kid, so yeah. Super personal. So THANK YOU again for all the support and love and donations.

If you’d like to donate – we’d love to have your support: https://www.justgiving.com/gareth-shave

So yes. Shaved our heads. Done!

 

Jan 27
1

The Inaugural #TeamMikaere Run

By | #teammikaere | One Comment

I’m super, super late getting this post up, considering it was last September. But, The Run! Capital T, Capital R.  You must have seen the many posts leading up to it, I was all over instagram + facebook, trying to get convince people to run, to volunteer, to donate. It was the first time we’d organised an event that felt this big, that required a proper team of volunteers and tickets and several days prep and it’s own fancy website – and I was so anxious that it go well!

But here’s the thing. We have asked every single person we know for a donation. We saturated our friends and families asking for donations. You know this, if you read our blog posts, because we ask you ALL THE TIME! We know there are only so many times we can go to our loved ones with our hands out. Because you’ve all already donated (and we love you for it) and the way we keep asking, with our desperation close in to our hearts, it’s disparaging.

So now we do events, because it’s more than just putting your hand out and asking. Because events mean our friends can bring their friends (which is reaching people outside our social circle). And because events feel like we’re *doing* something, something more than just posting another fundraising link to our social channels and crossing our fingers. But I’ve never organised a run before. Did you know that runs need Race Directors? And water stops (I literally didn’t, until the morning of our run, until our newly acquired Race Director very gently let me know that I should get *a lot* more water).

But, oh my days, we had 30 runners sign up. 30 people, who had committed to raising £100 each for NKH Research, to join us around the 12km course.  We had a dozen or so volunteers, from manning the water stops, to cheering us on, to follow us around the course and man the bag drop and put out arrows.

You guys…. 12km is not a short distance. I struggled. And in case it’s not clear what I mean by that: I was the very last one across the finish line, and I almost bawled my eyes out as I crossed it.  My son is never going to run. Not a single step, not 12km. NKH has robbed him of that opportunity.

Which meant that every step felt personal. It helped that Sam had pushed him around the course before me, and that one of my nearest and dearest, Breege (who lives the grief and special needs life too) ran alongside with me, letting me feel my feels as I went. This run, this fundraising, it’s personal. This was not ‘just’a another fundraising event (are they ever?)… This run genuinely was about hope. My hope. The hope that one day kids with severe NKH will run. That they’ll take steps independent of support equipment. That they’ll find the joy in independent movement.

I can’t tell you how much I want that for my son. The depths to which I hope and wish, and the overwhelming and shattering grief when the reality is unlikely for him. (Grief… it’s real and hard and we live with it everyday. You know how it is. I’m always bringing my grief to the internet). So, this run was personal for us. We were joined by two other NKH families, which made this run special. It’s always heartening to know we’re not alone. That there are people in our corner who share our life, our grief and our love.

Thank you to everyone who donated. Thank you to everyone who fundraised. Who ran, and volunteered (hi Lucy!) and who showed up to give NKH the finger. We love you, and we’re grateful. So so so grateful.

With matching, raised £12,741.00 – isn’t that a phenomenal amount?! It makes me quite teary. This means so much, so so so much to the world of NKH Research. I’m grateful for the love and persistence with which our runners met their fundraising pledges.

It’s important to me that everyone knows that our valiant fundraising efforts do not disappear into the ether. The funds were donated to Joseph’s Goal (run by Emma + Paul Kendrick, whose son Joe has NKH) and from there (in full) to Prof. Nick Greene at UCL, who is currently the world leader in NKH Research.

Funds like this make a tangible difference in the research that can be done by Nick.  When we met him earlier this year, he said donations like ours have sped up his research by approximately 18 months. That is life changing, when most children with NKH won’t see their first birthday. His team are making progress, which give us hope, something to hang to to.

Through him you give us hope that children with NKH might have a different future.

I also want to take a moment and thank Lou and Sam. Because without their love, and determination (and that cheeky lunchtime pint at our local) this run wouldn’t have happened. We love you guys, for offering help and for saying ‘ yes we can’ to something which felt impossible. We did it!

We’ll be back again next year. Do you fancy joining us?

If running is not your thing, is eating chicken nuggets? Fancy signing up the chicken nugget challenge – it goes down at the end of Feb!  www.teammikaere.com/chicken-nugget-challenge

 

 

Jan 04
0

Introducing: The Chicken Nugget Challenge

By | #teammikaere | No Comments

Last year we organised a 12km charity run that was wildly successful*. But, when you say you’re doing a 12km there is a definite barrier to entry. Not everyone wants to run 12km. So, to kick off the New Year, we wanted to introduce something anyone, anywhere could. A bit of silly fun to raise funds for NKH Research.

Introducing: the inaugural NKH Chicken Nugget Challenge!!

(I said it was a bit of silly fun, right?)

Here’s how it works:

1. You sign up to the justgiving team (#linkInBio)

2. You pick your level Supreme (100 nuggets) or Extra (50 nuggets).

3. You get each nugget sponsored, and have your friends and family donate to your just giving page. Supreme- 100 nuggets, sponsored at £1 each nugget. Extra – 50 nuggets, sponsored at £2 each nugget.

4. On the 29.02.20, you source your nuggets, and eat them following the rules.

5. If you can not finish your sponsored nuggets, you must donate an additional £1 per nugget not eaten.

If you’re in London, you can come join us in a SW London location (TBA!) to consume nuggets all together, or if you’re not able to join us – you can complete your challenge at home, or wherever is convenient.

Them rules:

1. Each nugget eaten must be sponsored, each participant must raise minimum of £100.

2. You must eat all your nuggets (as long as common sense dictates its safe to do so)

3. You can use as many sauces as you like

4. You source (and pay for) your own chicken nuggets (100 is £20 from McDonalds, conveniently delivered by Uber Eats, or your can pick some up from the freezer section of your local supermarket to cook at home)

5. You must not leave the table till you finish your nuggets or you yield (there is no time limit). If you yield, you must donate an extra £1 for each nugget not eaten.

6. You can be anywhere in the world, as long as at some point on the 29th of Feb you eat your nuggets, it’s fine!

7. You must take a fifteen second video (on your phone, landscape please) of how you’re feeling every ten nuggets, and upload it to a shared folder (as we will mix a quick promo video for sharing).

8. If you post anything to social media, you use the hashtag #nkhChickenNuggetChallenge

9. You must raise your funds for Joseph’s Goal.

Are you interested? Join us, we’re eating nuggets to raise funds for NKH Research!

More info: teammikaere.com/chicken-nugget-challenge

Sign up: https://www.justgiving.com/teams-creation/join/3f4c52de-50ea-47f5-87f3-75f002f08792

#linkInBio #chickenNuggetChallenge #nkhChickenNuggetChallenge #makingChange #nkhResearch #nonketotichyperglycinemia #ifhnkh #nugget

* By our little family fundraising standards. We were very pleased!

Oct 27
0

On friends running the Dublin Marathon

By | #teammikaere | No Comments

Today Shane, Maria and Kevin ran the Dublin marathon for #TeamMikaere and Joseph’s Goal.

Shane’s son Rauirí and Mikaere are friends from our local special needs playgroup. There is a lot of love between our families, we have an incredible amount of time for them.

Shane (and Maria and friends!), running for us today? That’s everything. They wore Kai’s name across their chests and ran 26.2 miles. A phenomenal achievement. Even more so, apparently one of their party injured themselves half way *and continued* still crossing the finish line. That level of determination is admirable.

They’ve also raised a whopping £2k for NKH research, and if I’m honest, that feels personal. That feels like over and above, and we’re grateful. Heartwrenchingly, overwhelmingly grateful. So to the Hoynes: thank you. Thank you thank you thank you, genuinely.

If you’d like to support this amazing achievement they’re fundraising on justgiving at: https://www.justgiving.com/fundraising/shane-maria

Oct 11
0

On the b:Generous Amsterdam + Paris Run

By | #teammikaere | No Comments

Every year Sam’s work does a Be Generous week, that’s focused around giving back to the community. It means charity events and volunteering and donating. Every year there is a run in Amsterdam (and this year Paris too!) for #teamMikaere and NKH Research. That this is a regular run blows my mind.

People sign up to run around Vondel Park, and people get their laps sponsored. I love that they do this. There were a few cheeky sponsors this year, who increased their sponsorship rate for higher laps. Sam flew across to Amsterdam to run, which was amazing. He ran 5 laps, with each lap being 3km. I can’t really fathom running that personally, we’re super proud of him!

Overall, there were 28 runners in Amsterdam, and 7 in Paris. They raised over €5,500 for NKH Research, which is no small act!

When I think about all those people who ran, when I think about Chris R who organised the runs, and all the people who  sponsored/donated – I get teary.

This is personal for us. This is our son’s future, one which is not promised or even expected, and here are all these people who clearly are with us. Research is the only hope we have for an effective treatment, for a better quality of life for our son. That money is the only bottleneck is frustrating.

I can’t begin to explain what a comfort it is to know that there are people fundraising on our behalf. That we’re not alone, that we’re not doing this by ourselves.

You make us feel heard, and seen. You give us hope. So thank you. We love you guys, and we’re grateful you’re on #teamMikaere

Aug 04
1

On the research happening in the UK

By | #teammikaere | 2 Comments

Woo! Research update!! One of the super cool things is the number of NKH mice models that are being used at UCL, that Prof. Nick Greene and his team work with.

They now have THREE mice models (more than any other research team) which is phenomenal. They’re all in the GLDC gene, but they are all different in severity. This means they can study different aspects of NKH and see how different treatments work with the different models.

Quick science aside: In every cell in our body, the cells read part of our dna (called genes) and use that as a recipe, make a protein. That protein goes on to do a specific job within the body. In NKH, if the child has a mutation in the GLDC gene, the GLDC protein is broken and the child is unable to process glycine. 

The mouse models are designed to mimic NKH – these mice are bred to have mutations in their GLDC genes so they are unable to process glycine, just like our kids.  Prof. Nick and his team have three working mouse models:

GldcGT1

These Mice have a ‘gene-trap’ – a magic genetic switch that allows the research team to have the GLDC gene either create the GLDC protein, or to turn it off so it doesn’t. 

When it’s off, these mice have NKH and present very similar symptoms like our kids do. They have higher levels of glycine in their blood, urine and body tissues, and about half the mice live for approximately 3 months. In the liver, they have perhaps 10% functionality of the GLDC protein (someone who doesn’t have NKH would have 100%).

The bonus of being able to turn the gene trap on and off is so they can understand how the glycine cleavage system works in different places in the body. It also means that if they turn it on (so the mice a producing the GLDC protein correctly), they can simulate what effect a working treatment might have.

(Side note: don’t be intimidated by the name. GLDC is the name of the gene. GT presumably stands for genetrap, and because they have 2 and this is the first, there is a 1 on the end)

GldcGT2

This is another gene trap mouse model (where they can turn the gene on and off), but this one completely prevents all GLDC gene expression (0% functionality of the GLDC protein). Very few mice survive after birth – this is a more severe model than the previous model.

By having a model that doesn’t produce any of the GLDC protein, they can see what the biochemical and metabolic effects are. This is huge for understanding what NKH does, and how it works. 

Gldc missense mutation

The team were able to create a model that has a missense mutation – a mutation that changes one ingredient in the NKH recipe (imagine replacing sugar with salt in a cake recipe, for example. The cake can no longer do its job of being delicious. Similarly, if the recipe for the GLDC protein is wrong, it can’t do its job processing glycine).

This is very similar to the kind of mutation a lot of NKH kids have. In fact, this is a known mutation, there are children with NKH who have this exact mutation! 

This model is used to test treatment options, and to better understand NKH progression. This is also huge, because if a treatment option works well with this model, there is a chance it would also work well with our kids. 

When I spoke to Nick last he said we know more about NKH now than we ever have before, and a lot of that is because of these models.

You guys, were so lucky to have Nick and his team on our side! He’s literally so far ahead of everyone else (side note: he’s already three years into gene replacement therapy research using these mouse models. I know the Drake Rayden Foundation are fundraising right now to kick off the exact same research that Nick’s already done.)

For everyone that supports #teamMikaere and Joseph’s Goal – this is where your money goes. This is where the life changing research is happening. This is where change is happening. So thank you, thank you thank you to everyone who has ever donated, bought a book or a tshirt or made a justgiving page! You guys are the best! 

PS – The Charity Fun run is happening on the 28th of September in London. Looking for both runners and volunteers! More at www.nkhcharityrun.com 🙂 

May 22
0

On the support from Infinis

By | #teammikaere | No Comments

We have a village around us, for sure. I’ve spoken already about how Kai’s Grandad Andy has rallied support through his work at Infinis. Mick, his colleague, ran everyday for a month last year for Team Mikaere.

To say thank you to Infinis for choosing Joseph’s Goal and Team Mikaere as their charity of the year we went up to visit. Quite a long time ago, (it was in October!).  They’re just wrapping their year now, and I wanted to say thank you, because this company went over and above.

When you walk into reception there is a giant poster of Mikaere and Andy. It’s right there, as you walk in the door. That’s how much they’ve got behind us.

When we visited we met lots of wonderful people, and I delivered a bit of a spiel (I was very emotional, and I cried. Telling groups of people about Mikaere’s history and his diagnosis never gets easier) – I moved it on, because I don’t enjoy crying in front groups of strangers, and we did a fun Q&A session. Mostly I asked them questions, how many people had raised safety concerns? (The company makes a donation for every time someone raises one). I asked how many people shop on Amazon, and asked them to use Amazon smile with Joseph’s Goal as their charity. I asked how many people had kids, and asked if they’d buy and Eva book.

And then they asked me questions. About the research. About his medication. About how the genetics work.

It was a lovely visit. It was lovely to meet people who were raising funds for us, who were helpful us find a future for our boy.

We’re grateful for every person who is on our team, and Infinis is clearly in our corner. Thanks Infinis, you guys are the best.

May 20
0

On raising £120,000

By | #teammikaere | No Comments

Every month we get an update from Joseph’s Goal, who sends a super in-depth spreadsheet on how much, we as a team, have raised in the last month.

At the beginning of May we ticked over £120,000 pounds. I just – YOU GUYS! That’s a phenomenal amount – and that’s all of you. That’s everyone who has ever come to one of our events, who has ever run a marathon wearing a Team Mikaere shirt, who helped walk the Thames Barrier or bought an Eva book. That’s every Inifinis employee who has ever raised a safety issue. That’s every BV employee who has run around VondelPark or up Snowdon or did Tough Mudder, or just donated to those who did. For those who ran marathons or half marathons or 10K or 5k or just, didn’t run at all. For Penny + Tony who run a BBQ for Kai every year, for the Toddington Methodist who picked Joseph’s Goal as their charity of the year two years running. For those who have organised a pub quiz, or a wine tasting, or had a bake off. For those who had a charity poker game.

Thank you. When Mikaere was born that number seemed impossible, and now we’ve raised over and above.

Thank you for being on our team. We love you guys, our gratitude for all that you do to help give us a future with our son is overwhelming. Every donation is personal to us. Every message, run, video – that’s personal to us. Every single pound – we’re grateful. Unbelievably so.

For every person who has ever made the effort, who has ever given what they could spare, who has ever fundraised – we are beyond grateful. You’re helping fund a cure for our boy. It’s personal for us. Every single donation is personal to us. Every single person who has gone out of their way to help us raise money, that’s personal to us.

So thank you. We love you more than you know, and we’re overwhelmingly, genuinely grateful.

PS – Right now, Katy is running 30 Park Runs this year, and is asking for a £1 donation per run. Margot just ran the Milton Keynes Marathon for NKH, and a team of BVers (led by Sam!) just completed their Tough Mudder experience. Please donate – please support these people who are supporting us.

If you’d prefer – please buy an Eva book (seriously, they’re only £4.95, and all the royalties go towards NKH Research). Or share one of the eva books. Please set your Amazon Smile Charity to Joseph’s Goal.

Every single donation makes a huge difference to NKH research, and has a huge huge impact on Mikaere’s quality of life and the hope we have.

For every person who has ever asked what they can do to help – this is it. Please run a fundraiser. Please donate. Please help us raise the money so we can find an effective treatment for NKH, and for Kaikai.

Please donate. We love you.