The Mikaere Foundation
@mikaerefoundation.bsky.social
Supporting children and families living with NKH
“All I want for Christmas is a cure for NKH - more time, more memories with my boy.”
For families facing NKH, Christmas is about moments that matter. Your £25 gift can help fund research and hope for better treatments - and one day, a cure.
mikaerefoundation.org/christmas
#NKH #ChristmasWish
For families facing NKH, Christmas is about moments that matter. Your £25 gift can help fund research and hope for better treatments - and one day, a cure.
mikaerefoundation.org/christmas
#NKH #ChristmasWish
December 10, 2025 at 11:07 AM
“All I want for Christmas is a cure for NKH - more time, more memories with my boy.”
For families facing NKH, Christmas is about moments that matter. Your £25 gift can help fund research and hope for better treatments - and one day, a cure.
mikaerefoundation.org/christmas
#NKH #ChristmasWish
For families facing NKH, Christmas is about moments that matter. Your £25 gift can help fund research and hope for better treatments - and one day, a cure.
mikaerefoundation.org/christmas
#NKH #ChristmasWish
Help us give children like Cara-Grace the gift of more time this Christmas. mikaerefoundation.org/christmas
#AlliWantForChristmas #NKH #NKHAwareness #GlycineEncephalopathy #NonketoticHyperglycinemia #ChristmasWish
#AlliWantForChristmas #NKH #NKHAwareness #GlycineEncephalopathy #NonketoticHyperglycinemia #ChristmasWish
December 8, 2025 at 8:42 AM
Help us give children like Cara-Grace the gift of more time this Christmas. mikaerefoundation.org/christmas
#AlliWantForChristmas #NKH #NKHAwareness #GlycineEncephalopathy #NonketoticHyperglycinemia #ChristmasWish
#AlliWantForChristmas #NKH #NKHAwareness #GlycineEncephalopathy #NonketoticHyperglycinemia #ChristmasWish
For families facing NKH, Christmas isn’t about gifts - it’s about hugs, laughter, and precious moments. NKH is terminal, but your support can help fund research that gives children with NKH more time. Give the gift of more time this Christmas mikaerefoundation.org/christmas #NKH”
December 6, 2025 at 7:50 PM
For families facing NKH, Christmas isn’t about gifts - it’s about hugs, laughter, and precious moments. NKH is terminal, but your support can help fund research that gives children with NKH more time. Give the gift of more time this Christmas mikaerefoundation.org/christmas #NKH”
🚨 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 💛
December 3, 2025 at 7:22 PM
🚨 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
December 3, 2025 at 7:21 PM
💚 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
November 12, 2025 at 9:52 AM
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
#NKHRemembranceDay #HopeForNKH #InMemory
November 2, 2025 at 10:03 AM
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
#NKHRemembranceDay #HopeForNKH #InMemory
Reposted by The Mikaere Foundation
🌟 @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
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
October 29, 2025 at 12:15 PM
🌟 @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
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
#TeamMikaere #Halloween10K
October 28, 2025 at 8:22 PM
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
#TeamMikaere #Halloween10K
Reposted by The Mikaere Foundation
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
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
October 25, 2025 at 5:56 AM
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
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
📅 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
October 26, 2025 at 8:22 AM
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
📅 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
October 6, 2025 at 6:25 PM
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
#NKH
September 28, 2025 at 8:32 PM
🎃 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
#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
September 15, 2025 at 11:16 AM
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
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
August 11, 2025 at 9:38 AM
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
August 11, 2025 at 9:12 AM
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
July 24, 2025 at 9:18 AM
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
July 24, 2025 at 9:15 AM
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
July 24, 2025 at 9:14 AM
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
#nonketoticHyperglycinemia #nkh #ifhnkh
July 24, 2025 at 9:12 AM
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
#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
July 24, 2025 at 9:11 AM
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
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
👉 mikaerefoundation.org/the-hive
May 14, 2025 at 8:55 PM
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
👉 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...
🫶 Help us to help those with NKH. Please donate:
www.justgiving.com/page/nkhawar...
May 1, 2025 at 8:32 AM
#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...
🫶 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
May 2nd is #NKHAwarenessDay - please donations for a cure:
www.justgiving.com/page/nkhawar...
#glycineencephalopathy
April 30, 2025 at 8:36 AM
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
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
May 2nd is #NKHAwarenessDay - we’re asking for donations towards a cure. Every penny helps: justgiving.com/page/nkhawarenessday2025
April 29, 2025 at 8:40 AM
#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
May 2nd is #NKHAwarenessDay - we’re asking for donations towards a cure. Every penny helps: justgiving.com/page/nkhawarenessday2025