The Mikaere Foundation

🚨 4 charity places remain for LLHM 2026 - please help us fill them by January! Take on an incredible challenge and run for kids with NKH. If it’s not for you, tag a runner or share! 12 Apr 2026 • £30 reg • Pall Mall, London • £395 minimum sponsorship. More at mikaerefoundation.org/llhm #LLHM2026 💛

💚 Thanks to all who joined the NKH Meet Up at the British Motor Museum! It was a really wonderful day - stories shared, an amazing sound bath, great tours. Grateful to connect with NKH families who get it. Till next time! #NKHMeetUp #NKHCommunity #NonketoticHyperglycinemia #RareDisease

Last week, Elly met Dr Van Hove, one of our NKH research partners, while he was in London for the IND Conference. It was an inspiring catch-up - full of exciting ideas, research updates, and hope for what’s ahead in NKH research. Momentum is building and the future feels hopeful! #CureNKH

Today we remember the NKH children who have died because of NKH - their smiles, strength, and love. We stand with every family facing this rare, devastating disorder. There’s no cure yet, but hope for change lis found in research, awareness and community. 💫
#NKHRemembranceDay #HopeForNKH #InMemory

🌟 @mikaerefoundation.bsky.social is now PIF TICK re-certified.

This means its health information continues to be:
- Evidence-based
- Up-to-date
- Easy to use and understand

Get PIF TICK certified: pifonline.org.uk/pif-tick/how...

#HealthInformation
#PIFTICK

Our Halloween 10K Heroes did it! 🎃 Thank you to Elly, Laura, Michelle and Belinda (and Lucy!) smashed the 10K Walk in London, raising £2,100+ for children with NKH. 💙 They walked in memory of Mikaere & in hope for Teo - every step bringing us closer to a cure. 💪✨

#TeamMikaere #Halloween10K

Trial readiness starts long before a drug enters the clinic.
New JIMD review from Opladen & colleagues (Heidelberg) shows how understanding the natural history of IMDs, through registries, RWD, PROMs & predictive models, underpins every successful rare disease trial.

🔗 doi.org/10.1002/jimd.70102

For our NKH families- join us for another NKH Meet Up at the British Motor Museum, Warwick!

📅 Sun 30 Nov, 10:30–4pm
£7 adults, £4 kids (5–16), carers & under 5s free.

Wheelchair accessible, play areas, snacks & a calming sound bath session!

Get tickets 👉 mikaerefoundation.org/meetup

#nkhmeetup

Research updates: UCL is progressing with gene therapy for NKH, with major funding applications underway. The University of Colorado team is optimising compound trials, with new models + metabolomic studies. Change is coming for children with NKH. Read more: mikaerefoundation.org/research-updates

🎃 Join the spookiest charity walk! On Sat 25 Oct, take on 10km or 25km through London’s haunted streets. Walk solo or join our 10k team, earn a medal, fizz, hot food & a bobble hat! Fundraise for a children with NKH and a cure. Sign up: mikaerefoundation.org/events/hallo...
#NKH

We’ve sent another £5k to UCL for NKH research - gene therapy, mRNA & more. For a real future for kids with NKH. That’s £77k total so far. Every donation speeds up progress toward a future where NKH doesn’t limit lives. Thank you for being in our corner. 💚 #nkh #teamMikaere #cure4nkh #fundraising

Your sweet girl - she was so precious, and clearly very well loved <3

Huge thanks to everyone who took part in the NKH 100 Mile Challenge! 💙 Together, we raised £4,234.29 to support kids with NKH and NKH research. Every mile brings us closer to a cure! Want to join in 2026? Sign up to our newsletter! #CureNKH #NonketoticHyperglycinemia

Meet Luka, a sweet boy with NKH. His mom says, “We focus on quality over quantity. Every day with him is a gift.” NKH is rare, life-limiting, and brutal - no family chooses this. That’s why we fight for a cure, because Luka deserves a future. 💙 #CureNKH #RareDiseaseAwareness #SupportRare

Meet Alice. Alice has NKH, and just turned 14 - a miracle after the rollercoaster of living in hospital and palliative care in her first year. Her journey with NKH has been brutal, but she's here. We fight for better futures for kids like Alice. 💛 mikaerefoundation.org #CureNKH #RareButReal

No parent should hear “there’s no treatment.” Help us change that. Just £3/month can help fund NKH research and give children with NKH a real chance at a future. Join us: mikaerefoundation.org/the-hive 💛 #CureNKH #RareButWorthIt #TeamMikaere

New NKH diagnosis? We know how overwhelming that can be. That’s why we launched nkh.org - a trusted resource for families, reviewed by experts and based on science. We're with you 💛 #NKH #RareDiseaseSupport #PIFTick #NKHSupport #TrustworthyHealthInfo

Happy Birthday Christina! For her birthday, she raised £100+ for NKH research in honour of her son Samuel, who lives with NKH. These funds help push gene therapy forward - because every child with NKH deserves a future. Danke, Christina! 🐝 #NKH
#nonketoticHyperglycinemia #nkh #ifhnkh

Join #teamMikaere for a fun inflatable 5K near you! With 4 distances (2.5K–15K), it’s perfect for families (kids 5+) or friends. Raise £150 for children with NKH and make a real difference. Sign up now: mikaerefoundation.org/inflatable5k 💙 #RunForNKH #BounceForACure

White background, green and grey text: What is the glycine cleavage system? (and why does it matter to kids with NKH?)

The glycine cleavage system processes glycine within the body but in NKH, this system is broken. Glycine toxicity causes many devastating issues. There’s no cure - yet. But research is key and there's hope. Help us fund one 🧬 Join the HIVE and bring hope to NKH kids
👉 mikaerefoundation.org/the-hive

#NonketoticHyperglycinemia is considered terminal and life limiting. #NKH Children are often moved to palliative care within days of birth, where 1 in 3 born with NKH are unlikely to see their first birthday.

🫶 Help us to help those with NKH. Please donate:
www.justgiving.com/page/nkhawar...

With #NKH, severity is tricky to predict, and can’t be predicted from birth/initial presentation. Some children don’t reach milestones past that of a newborn. It's heartbreaking.

May 2nd is #NKHAwarenessDay - please donations for a cure:
www.justgiving.com/page/nkhawar...

#glycineencephalopathy

#NKH can cause profound disability and pain. Child with severe NKH are often unable to walk, eat, talk or live independent lives. They have seizures and are tube fed.

May 2nd is #NKHAwarenessDay - we’re asking for donations towards a cure. Every penny helps: justgiving.com/page/nkhawarenessday2025

A child affected by Nonketotic Hyperglycinemia has two mutations in an #NKH gene and the odds of having a child with NKH if both parents are carriers is 25%.

May 2nd is #NKHAwarenessDay - please donate towards an NKH cure:
justgiving.com/page/nkhawarenessday2025

#nonketoticHyperglycinemia

#NKH is rare. In the UK it’s thought there are 50-100 kids living with NKH, despite an incidence ratio of 1 in 76,000 births. The gap is because of the survival rate for NKH is so low.

May 2nd is #NKHAwarenessDay. Please donate:
justgiving.com/page/nkhawarenessday2025
⁣
#nonketoticHyperglycinemia

Nonketotic Hyperglycinemia (NKH) is a rare disorder in children, where they can't process glycine. It's is a brutal disorder.

May 2nd is #NKHAwarenessDay - swap your coffee for a donation towards NKH Research:
justgiving.com/page/nkhawarenessday2025
⁣
#nkhawareness #nonketoticHyperglycinemia #NKH

1 in 3 kids born with NKH won't see their first birthday. We want to give them a future by funding a gene therapy cure, but can't do it without you! For as little as £5 a month, you can help us give children with NKH a future.

✍️ Join the HIVE today mikaerefoundation.org/the-hive

#nkh

2025! Is *this* the year we fund a CURE for NKH? We have a gene therapy, life changing treatment. It exists. The only hold up is funds.

Can you help us get there? 🫶 Help us help those with NKH: £10, £5, even just £2 a month helps

Sign up today and join the HIVE!
mikaerefoundation.org/the-hive

Hello BlueSky!