The Mikaere Foundation
Founded in 2017 (previously as the Foundation for Nonketotic Hyperglycinemia), the Mikaere Foundation is a UK-based charity that raise funds for NKH Research, to further the knowledge of and bring about effective treatment options. We also provide information and support to families living with NKH. It’s not an easy path, and because of the rarity of NKH, information can be difficult to come by. We hope to change that.
The Mikaere Foundation is a registered charity in England and Wales, charity number 1200720.
What we do
We have three main goals:
1. Raise funds for research into an effective treatment for Nonketotic Hyerpglycinemia (NKH)
Currently, there is no effective treatment for NKH. We support Prof Nicholas Greene
(a professor of Developmental Neurobiology in the Developmental Biology & Cancer Dept at UCL Great Ormond Street Institute of Child Health) who is currently the lead in progress towards gene replacement therapy and a sodium benzoate alternative.
If you are a researcher involved in projects with NKH, and would like to put yourself forward for funding, please fill out a Request for Funds Form and a Due Diligence Form, and return to email@example.com to be considered.
2. Support families living with Nonketotic Hyerpglycinemia (NKH) via a patient informational website
We support foundationnkh.org, the only patient informational website of its kind, sharing in-depth medical knowledge about Nonketotic Hyerpglycinemia (NKH) in a manner that all families can understand.
3. Raise awareness of Nonketotic Hyerpglycinemia (NKH) and support NKH-related initiatives.
These are behind-the-scenes initiatives that support the advancement of knowledge of Nonketotic Hyperglycinemia (NKH) or meet a need that eases the experiences of families living with Nonketotic Hyperglycinemia (NKH).
Mikaere was born with Nonketotic Hyperglycinemia in late 2016. His family spent countless weeks in Intensive Care, hospital and hospice on end of life care. They’re lucky to currently be home with their little guy. He’s well-loved, but living with NKH is not what Sam or Elly expected. They were determined that their little boy would make his mark on this world and wanted to contribute to the NKH community that has supported their little family.
For more information about their story, please visit:
Website + Blog: teammikaere.com
The Charity Trustees
The Board of Trustees includes:
– Elly Hulance (Chair)
– Sam Hulance
– Wendy Hulance
– Andy Hulance
– Kirsty Lester
– Jamie Irving
– Tony Collins