Upcoming Events

NKH Charity Run

Postponed 🙁

You know we’re doing this one again in 2020! It was such a success last year.  It’ll be an easy flat run around the Thames Path, split into two courses: a 5km and a 12km.

Making it happen for NKH Research. Yus!

More Info

Winter Wine Tasting

Postponed 🙁

Happening in November! We’ve had such successes with previous wine tastings, and with our local sommelier Chris Cooke, you know it’s going to be a good time.

Hold tight for ticket info + logistics closer to November!

Sams running an Ultra Marathon

Postponed 🙁

Shortly after running a 12km race, Sam decided he was going to run a 50 mile ultra marathon. The SDW50 is a 50 mile foot race along the South Downs Way National Trail, beginning at Worthing and finishing in Eastbourne.

Woah buddy!

Can you fundraise for us?

Because NKH is so rare, every single pound has a profound effect on what research can be done. Bake Sales, Raffles, a Coffee morning, a poker game… the possibilities are endless. Please help us fundraise – we’re so very keen to find treatment for Kai!

If you’re keen, let us know. x

Past Events


NKH Awareness Day

Raised £2,964.00

Get quizzical with Team Mikaere for an evening of (virtual) brain teasers and puzzles with our wonderful hosts Tony Conway and Tess Elford! Last quiz was proper hilarious and amazing and super fun, and we’re looking forward to the ridiculousness of this year’s quiz! Held on Zoom, it was GREAT!


Charity Pub Quiz

Raised £4,306.90

Get quizzical with Team Mikaere for an evening of (virtual) brain teasers and puzzles with our wonderful hosts Tony Conway and Tess Elford! Last quiz was proper hilarious and amazing and super fun, and we’re looking forward to the ridiculousness of this year’s quiz! Held on Zoom, it was GREAT!

Kai’s 4th Birthday!

Raised £1,601.00

Another year, another birthday – we’re so lucky, hey?

NKH Race Night

Raised £758.00

What a NIGHT! The NKH Charity Race Night, held in America Square – it was FANTASTIC!

8 races – 8 horses each. Each bet was a minimum of £2, and if your chosen mount comes in, you WIN! Woo! Half the takings for each race will be split evenly between the charity + the winners. It was a really really fabulous night, we had a great time.

Thanks to everyone who came out!


Chicken Nugget Challenge

Raised £3,266.00

Chicken Nugget Challenge! How many chicken nuggets do you think you could eat? 10? 50? 100?!

We’re setting the bar high! 100, and you get each nugget sponsored by £1.  If you don’t think your stomach can eat that much, there’s a second level of 50 nuggets, each sponsored at £2.

NKH Charity Hair Shave

Raised £5,196.00

Elly and Gareth both have long hair, and haven’t cut it in over 5 years, minumum. That means that Elly has mermaid length hair, and Gareth looks like a homeless nomad (which: accurate).  They’re going to shave it all for NKH Research (woo!)

The Eva Book!

Raised £1,521.73

We sold 1215 Eva books on Amazon in 2020. In over 20 different languages. There were lots of 5 star reviews (and the occasional 1 star, but you can’t please them all).  Overall, I am beyond pleased with how Eva has contributed to NKH Research, and continues to do so! Well done Eva!

– Eva Books on Amazon


NKH Awareness Day

Raised £5,036.00

The annual NKH Awareness Day drive. We’re grateful so many supported, donated and helped. We shared facts and faces, and it was a really really great day of love (and heart break, oh Arthur. We’ll remember you always)

Facebook Fundraiser
– May 2019

b:Generous Week 2019

Raised £2,374.63! 

The Bazaarvoice team ran in Paris and Amsterdam and London! That they do this every year as part of b:generous week is really something – we have a lot of love for BV, for the people that organise these runs, those that donate and those that run. So so grateful for the BV team! #OTOD!

Justgiving Campaign
– September 2019

Bar-b-Kai 3: The Final Meat-ier

Raised £1147.00

The end of the trilogy. We’re so so so grateful to Penny and Tony for going above and beyond these last three years – their BBQ’s are epic, with so much deliciousness. We don’t have words for how much their support has meant.

– August 2019

NKH Charity Run

Raised £12,601.00

30+ people ran 12km along the River Thames, raising money for NKH. 12km is a long way, and honestly, it was a really emotional, amazing day. We’re so grateful for everyone who ran, for everyone who fundraised over and above. For Sales Force, for sponsoring. We’re so so grateful. It was an amazing day!

– September 2019

Sales Force Bake Sale

Raised £340! 

Sales Force listened to me do a talk, and then bought cake, and did a run. It was really wonderful, and I’m so so grateful to everyone who came to listen, who donated, bought and ate cake. You’re all wonderful, lovely people!

– July 2019

Shane and Maria run the Dublin Marathon

Raised £2,294.28

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!) wore Kai’s name across their chests and ran 26.2 miles. A phenomenal achievement. We love them, we’re grateful

Justgiving Campaign

– 27 October 2019

BV Toughing it for #TeamMikaere

Raised £4,040.00

16 BV employees did Tough Mudder 2019, braving the wind, the cold, the rain and hail, the obstacles and running through mud for #teamMikaere. They made it through with plenty of war wounds (mostly scrapes, bumps and bruises) and crossed the finish line together. It was pretty tough (it’s all in the name!) but so pleased we all made it through!

Justgiving Campaign
– May 2019

Margot’s Milton Keynes Marathon

Raised £260! 

We don’t have words, this is Margot’s THIRD marathon for #teamMikaere (having run Berlin + London last year). What a lady, hey? We’re so grateful, so so so grateful and proud to have Margot on #teamMikaere. She’s the best!

Just Giving Campaign
– May 2019

Katy’s running 30 Park Runs

Raised £631.53

Katy, a friend of Elly + Sam’s had set a personal goal to run 30 Park Runs this year. She’s asking £1 a run, which we think is pretty amazing. We love this lady, and are so grateful for her continued (and so genuine!) support. Thank you Katy!

Justgiving Campaign
– March 2019 – Dec 2019

Eva the Adventurer Book Sales

Raised £1141.34

We sold 905 Eva books on Amazon in 2019. In over 20 different languages. There were lots of 5 star reviews (and the occasional 1 star, but you can’t please them all).  Overall, I am beyond pleased with how Eva has contributed to NKH Research, and continues to do so! Well done Eva!

Eva Books on Amazon


BV b:generous Snowdon Climb

Raised £3,606.96

Every year Bazaarvoice does a b:generous week where they raise funds for charity. This year they climbed Snowdon for #teamMikaere – you guys are the best. Thanks to: Paul Abercrombie, Jack Marshall, Sam Hulance, Conor Harlowe, Adam Street, Marcin Baga, Rebecca Fox, Beks Buchan, Sean Bannon-Guillaume, Alex Watson. You guys are THE BEST x

Justgiving Campaign
– Oct 2018

Sarah and Lizzie’s Half Marathon

Raised £870.10! 

We’re grateful to Sarah and Lizzie, who ran the Oxford Half for #teamMikaere – it was Sarah’s first half and they ran together, getting each other through. You guys are amazing. Thanks for running for Team Mikaere!

– October 2018
Just Giving Campaign

Mick’s Running 31 days in October

Raised £1,359.00

Mick Holton works with Andy, Kai’s Grandad! Mick’s running every day in October (!) for #teamMikaere and Joesph’s Goal. He’s been very supportive of our fundraising efforts and we’re incredibly grateful for his support!

Justgiving Campaign
– October 2018

The Felicity Wilde Charitable Trust

Raised £2500.00

We couldn’t find out much about the Felicity Wilde Charitable Trust. We don’t know who Felicity Wilde is (or was?) but I bet she is (was?) lovely.   Sam wrote a letter to the trust and we’re so grateful for their support, blown away by their generosity. Thank you, Felicity Wilde Charitable Trust!

The Hub’s All Hell Breaks Loose 9

Raised £10,020.06! 

Elly has known Carissa + Rand for years, through their good friend Liz. Carissa + Rand run the Hub, and put on amazing conventions. For the Supernatural Convention All Hell Breaks Loose 9, #teamMikaere + Joseph’s Goal were chosen as the events charity, and we’re BLOWN AWAY by the support (and the person that bought a $5k shirt from Mischa Collins). Grateful doesn’t even cut it.

– June 2018
Event Page
Event #TeamMikaere Info Video

Random Acts of Kindness

Raised $1,070.00

Random Acts of Kindness had a booth at All Hell Breaks Loose 9 and they raised funds for #teamMikaere + Joesph’s Goal. So thank you Random Acts of Kindness, we appreciate your support!

Random Acts of Kindness Website
– June 2018

Margot ran the London Marathon

Raised £846.83

Having already run the Berlin Marathon for #teamMikaere last year, we’re grateful she’s had the chance to tackle the London Marathon and chose to run for #teamMikaere a second time! What an amazing lady, we love her, really.

Just Giving Campaign
– April 2018

Bar-b-Kai 2: The Meat Returns

Raised £1,200.00! 

What an amazing BBQ – there was a phenomenal amount of meat, 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! Thanks to Penny + Tony for the support!

– May 2018

Bazaarvoice b:Generous Run

Raised €3,564.30

We’re so grateful for the Bazaarvoice Amsterdam, France + Belgium offices running challenges around their local parks to raise funds for #teamMikaere. So many people came out, so many people ran in #teamMikaere shirts, so much money was raised! You guys are the greatest. Really you are. Heroes, all of you!

Just Giving Campaign
– October 2018

Chris ran the Edinburgh Marathon

Raised £759.22

Chris ran the Edinburgh Marathon! For a guy that usually brings the drinks to our dinner parties and runs wine tastings, we were absolutely blown away by his effort and support. What a guy!

Just Giving Campaign
– May 2018

Adam’s Ride from London to Paris

Raised £1,113.66! 

Adam rode from London to Paris (over 240 miles!) to raise funds for research into Nonketotic Hyperglycinemia (NKH). What a trooper, hey? There’s something to be said for the BV crowd, they’re so supportive and so amazing. Very much appreciated Adam!

Justgiving campaign
– 28 May 2018

Charity Wine Tasting

Raised £473.18

Based on the success of our last wine tasting in August we’re delighted to be doing another Wine Tasting. With spot prizes, hampers for raffles and nibbles to go with the wine pairings and a blind tasting it’ll be a fab afternoon. Particularly with the amazing Chris Cooke running the tasting.

We’ll also have wine by the glass available after the event and you can buy bottles of the wine you’ve tasted.

  • July 17th 2018

Charity Art Exhibition

Raised £1732.93

The Toddington and Westoning Art Group is holding a charity exhibition (woohoo!) – there will be plenty of amazing paintings and art for sale and for viewing, as well as tombomla and refreshments. We’re very excited to see all the great works of art – we know this exhibition has been a long time in coming.

Team Mikaere Shop Sales

Raised £288.50! 

Very impressed considering we only sell cards*. You guys are so generous, we’re so grateful for the support.

* Cards at the moment. Tshirt and cuffs coming soon, we hope!

– Shop Now

Inaugural Charity Quiz

Raised £2900.00!

Get quizzical with Team Mikaere for an afternoon of brain teasers and puzzles with our wonderful hosts Tony Conway and Tess Elford! It was hilarious and amazing and super fun. Can’t wait till next year!

– 20 Jan 2018
– Putney, London
Post here

Eva the Adventurer Book Sales

Raised £844.30

We sold 700 Eva books on Amazon in 2018. In over 15 different languages. There were lots of 5 star reviews (and the occasional 1 star, but you can’t please them all).  Overall, I am beyond pleased with how Eva has contributed to NKH Research, and continues to do so! Well done Eva!

Eva Books on Amazon


Kais Very First Birthday Party

Raised £500!

I’m a bit emotional, writing this. We were told early on that it was unlikely Kai was live as long as we’d like. The idea of him making it to his first birthday seemed impossible.

But here we are, ready to celebrate it like we’ve never celebrated before, ready to stick two fingers to NKH and love on our little miracle baby, our little warrior.

Because we’ve raised so much for NKH Research, we’re going to take a break and raise some money for Kai. For his treatments and therapies that we can’t ourselves afford out of pocket and aren’t covered on the NHS. So, instead of gifts, we’re asking help to pay for life-changing therapy for Kai.

– Oct 2017

BV Germany Munich the River Isar

Raised €974.46

We’re so grateful to BV and the German office, who are walking the River Isar as part of the b:generous week at BV. You guys are AWESOME!

Donations Page
– Friday 29 September
– The River Isar

Josie’s Running the Istanbul Marathon!

Raised £1,582.00

Kai’s Aunty Josie is running in the Istanbul Marathon! We’re super impressed (Sam especially, after walking a marathon a day for three days, the idea of running it is CRAZY) – we’re super super proud of Josie. Grateful that she’s on #teamMikaere.

She’s been training since MAY, and (in her words): ” it has been quite a challenge! Running in 30 degree heat (I hate to complain…but!), being caught out in numerous storms, getting tear gassed, being lost for 2 hours in the back streets of Istanbul, endless hills and weaving my way through some of the 15 million people that live here in Istanbul!”

We love her, obvs.

– 12 November 2017
– Istanbul

The Cellar Singers: Water Night

Raised £800.00

What an amazing, amazing night. The cappella group The Cellar Singers sang a mix of sacred, classical and pop, lots of beautiful music that we hadn’t heard, and some fun pieces that you had. Highlights: the Pitch Perfect-esque encore, Under the Sea, the Billy Joel piece, the Abba Medly, it was AMAZE!

Also, thank you to Majestic Putney for helping out with the wine!

– Wednesday 20 September
– St Saviour’s, Pimlico

Sam’s walking 78 miles for NKH!

Raised £8,597.94

What a weekend. Sam and a few people from BV walked 78 miles (!) along the Thames Path – from Henley to the Thames Barrier. Oh mmy DAYS! It was emotional, and we’re so proud of Sam!!

Thanks to the BV Team, thanks to all the other walkers, thanks to everyone who donated or sponsored a mile. It was a long, hard weekend, but we’re so proud and grateful to all of you!

– Friday 22 – Sunday 24 of September
– The Thames Path, from Henley to the Thames Barrier
Donation Page

BV Amsterdam Run Vondle Park

Raised €2500

Another b:generous event, the Amsterdam office ran around Vondel Park – what rockstars! We love them – thank you guys for being part of #teamMikaere, you’re amazing. We love you!
– 19 September
– Vondel Park, Amsterdam

#teamMikaere Charity Wine Tasting

Raised £577 on the day, £450 after

We’re so lucky to know and love a clever Irish gent who works in wine. He very kindly agreed to run a wine tasting evening for us, and it was SO FAB! There was great wine, great company, a fun blind tasting. It was a pretty intimate group, but we’re thankful for everyone that came out. You guys are the best!

– Saturday 12 August 2017
– Ranelagh Sailing Club, Putney, SW15 1LB

#teamMikaere Garden Party

Raised £2202.27

What an amazing day!  Kai’s Grandparents + Great Aunts are threw Kai a garden party! There was be all sorts of stalls (plants, art, fresh produce, cake, bric-a-brac), fun garden games (the wine/water game was fab!), tombola and a hamper raffle!

Thanks to everyone who came. It was such an amazing day!

– 17 September 2017
– Midway House, Toddington

Kristin fundraised for the Thames Path walk

Raised £180.00 

Kristin, and ex-BVer was keen to jump on the wagon with The Walk – especially as the BV Alumni + current BVers are so close! Kristin planned to join the team on the walk, and raised donations from her new crowd to make it happen. Love it.

Thanks Kristin! We love you!

Donations Page

Birthday Bash in Toddington

Raised £1050!!!

Oh my days, what a wonderful a birthday bash for Jude, Marion, Margot, John and Dorothy! There was a super fun raffle, and we very much enjoyed the company. Kai even managed to get a few lovely cuddles in. It was lovely! Thanks to everyone who came, we were overwhelmed with your generosity!

– July 1st 2017
– Toddington

Margot ran the Berlin Marathon!

Raised £369.26

Margot, Kai’s very first babysitter ran in the Berlin Marathon!! Honestly, Margot is just the most amazing, the most generous person you’ve ever met. We’re so proud, she’s such a force of nature (seriously – a real life superwoman) and we’re so grateful she’s on our team!

– 24 Sept 2017
– Berlin, Germany
Donation Page

The N Smith Charitable Settlement

Sponsored £1000.00!

We’re very lucky that The N Smith Charitable Settlement responded to our letter with a donation of £1000. I tried to find out more about Nora Smith. She died in 1992, but alas, that’s all I found. So thank you, Nora. Thank you to the people on the board. We’re very very grateful for the support.

– August 2017

Blaze! with James Fountain and Fulham Brass Band

Raised £937! Woohoo!

The Fulham Brass Band kindly put on a charity concert, with proceeds going towards NKH Research. Woo hoo! Fulham Brass Band (conducted by John Ward) with special guest, James Fountain (principal trumpet of the Royal Philharmonic Orchestra) performed Phil Lawrence’s astonishing concerto ‘Blaze’, as well as music by Queen, Andrew Lloyd-Webber, Gavin Higgins, The Beatles, Richard Rodney Bennett and George Lloyd.

And there was cake. Oh. My. Days. The cake sale – it was DELICIOUS. Very grateful – thanks to everyone who came out!!

– Sunday 21 May 2017
Fulham Brass Band

Buggyfit Charity Walk + Picnic

Raised £488.28!

Eliza, Buggyfit extraordinaire is ran a fundraiser buggyfit walk with a picnic, sponsored by Piccolo Baby Food + Sweaty Betty. We’ll did a few laps of Wandsworth Park + enjoyed a super cute picnic, with all the little ones enjoying plenty of finger food.

There was even a silent auction, that included prizes from Sweaty Betty, a Mummy MOT, Buggfit classes, a Piccolo goodie bag, Bootybarre classes, a massage, a Putt in the Park family pass, and a beautiful Burberry Silk Scarf.
Thanks to everyone that came out!

– Thursday 29 June 2017
– Picnic video

St Georges Coffee Morning

Raised £100!!!

The lovely St Georges held a coffee and cake morning for Kai  – we’re so grateful! St Georges is such a beautiful church, we’re so pleased to have the support.

– July 2017
– Toddington

Dunstable Rock Choir Concert

Raised £698.20! Very very impressed!

There as an informal Dunstable Rock Choir Concert with a raffle for #teamMikaere and NKH Research. Kai’s Grandma sings in the Rock Choir, and we’re so pleased to have the support!

– Tues 21st March 2017
– www.rockchoir.com

Infinis Sponsorship

Sponsored £1000.00!

Kai’s Grandad Andy does some pretty fancy something-a-rathers at Infinis, and we were so grateful to hear they were willing to donate to the cause.

Thank you Infinis!
– www.infinis.com

Charity Cooking Class with The Avenue

Raised £758!

The Avenue Cookery School is one of our local businesses – they hosted an amazing amazing cookery class, taught by The Avenue’s Italian chef, Stefano! There was wine and we were shown step by step how to whip up little pockets of joy (aka, delicious ravioli). Our creations were topped with fresh rocket and a walnut beurre noisette, followed by a light lemony pudding made by the in-house chefs. Add the unlimited, free flowing wine and the knowledge that we were helping to save lives with our charitable donations – it was SUCH a great night! Thanks to the Avenue for hosting.

– Friday 23 June – 7pm to 10pm
The Avenue Cookery School

HRW Rare Disease Day

Raised £235! Woo!

Healthcare Research Worldwide (HRW) held a raffle and a bake sale on Rare Disease Day – we’re so pleased they chose to support NKH and Joseph’s Goal!

– 28 Feb 2017
– www.hrwhealthcare.com

BV’s Matching Campaign

Raised £1947.45!

Bazaarvoice very kindly ran a matching campaign for Joseph’s Goal, matching up to $750 that BV employee’s make. So kind!

It was in 2011, in a little BV office in Hammersmith Sam and Elly met for the first time. Fast forward a four years – past many pub visits + legendary BV celebrations – we now have a beautiful little baby boy.

– 06 Jan 2017
Just Giving Campaign
– www.bazaarvoice.com

Toddington Bar-be-Kai (BBQ)

Raised £1,130! So very generous x

A charity BBQ put on by the charming Penny + Tony Collins. There was a raffle, a cake auction with many things for sale (paintings + cards).  All proceeds went towards NKH Research – we’re so grateful for everyone who came. So generous!!

– Saturday 6th May 2017


Kai’s First Christmas

Raised £8000.56!

Instead of presents we asked for donations. We spent Christmas and New Years in intensive care at St Georges. It was a hard time. We’re so grateful for the love and support and donations that came rolling in over that Christmas period – you guys are amazing!

– 25 Dec 2016

– Just Giving Campaign