Supporting families with children who have Nonketotic Hyperglycinemia
Raising awareness, connecting families, bringing
hope and building futures.
Mikaere Grant Hulance
11 October 2016 – 13 August 2024
It is with the heaviest of all hearts that Sam and Elly share that our beautiful, beautiful boy has died. We love him, and we miss him so very, very much.
Thank you for all the kind words and support. Instead of flowers or cards, please instead donate to his memorial fund if you feel moved to:
We love you so very much. Moe mai rā Kaikai x
The Mikaere Foundation supports children living with Nonketotic Hyperglycinemia (NKH), a rare and terminal neurometabolic disorder.
What we do
Raise funds for Research into Nonketotic Hyperglycinemia (NKH)
Currently, there is no effective treatment for NKH. Medicines currently available for Nonketotic Hyperglycinemia do not stop the progression or relieve symptoms of the neurometabolic disorder.
We’re partnered with UCL and the team under Prof. Nick Greene to better understand the disorder progression and to develop novel therapies, such as gene replacement therapy.
Provide clear information about NKH for families and the medical professionals who support them
When a child is diagnosed with NKH, it is very rare that they are given any information. It can be a very scary time.
We provide accredited and trusted patient information via the NKH Info Booklet and the patient website: foundationnkh.org. Both share in-depth medical knowledge about Nonketotic Hyperglycinemia (NKH) for those who need it.
Provide support for families living with Nonketotic Hyperglycinemia
We hold Family Meet Ups for the NKH Community here in the UK. Family meet ups can offer connection, emotional support and provide a safe space to share struggles, find empathy and reduce isolation for families. It also provides an opportunity for families to pool knowledge and share practical resources/tips for raising a child with NKH.
We support families wherever we can. When we can see a need that will help the experience of families living with NKH, we’re working towards a solution.
How you can help
Donate to the Mikaere Foundation
It is only thanks to your donations that we can give life-threatened children and their families the hope and support they need.
Fundraise for the Mikaere Foundation
Choose a challenge, pledge your birthday or let us inspire you with some great fundraising ideas.
Volunteer with the Mikaere Foundation
We have a few open roles, if you have the specialist skills needed (or, if you just want to lend a hand!) – get involved!
Run the 2025 London Landmarks Half Marathon
Run the LLHM and make a difference! One in three children born with NKH won’t see their first birthday. We can change this! Conquer this stunning closed road, central London run – the only half marathon to go through both the City of London and City of Westminster. This scenic run is great for first-time runners or regular runners wanting to hit their PB.
Challenge yourself for children with NKH
The Challenge Events are a series of 10km, 25km or 50km ULTRA walks/runs across the year. Available all over the UK these events are a great way to raise funds for NKH Research and to challenge yourself.
Skydive for NKH Research
Raise funds for Nonketotic Hyperglycinemia (NKH) Research and skydive for FREE! Jumps available to book at 18 airfields across the UK with various days and times to choose from, all year round.
Raise free funds for NKH wth your everyday shopping!
Give as you Live Online is a free way to raise money for charity when you shop online.
Shop at over 6,000 leading stores via our website, Donation Reminder or App and you’ll raise free funds for The Mikaere Foundation.