Dates

NKH Remembrance Day – 2nd November

To remember all the NKH kids that have passed, and to raise awareness for our NKH warriors still fighting.

NKH Awareness Day – 2nd May

This is the day we as a community share the reality of living with NKH, to raise awareness and funds for NKH research.

More on how we celebrate here.

Charities

In 2020, Team Mikaere did an NKH Charity Review. You can read it here.

NKH Charities

  • Joseph’s Goal
    The only UK based charity supporting Prof. Nick Greene at UCL (the closest to a clinical trial for gene replacement therapy). Run by the Kendrick family. Their mission is to raise awareness of NKH and raise funds for NKH Research and family support. They also run the UK Conference every year.
  • NKH Crusaders
    The most widely recognised US not for profit. Run by the Archibald family and based in Massachusetts. Their mission to raise awareness for NKH and to support NKH Research towards a long term, effective treatment. They support Dr Katsuri Haldar at the University of Notre Dame, and Dr Van Hove at the University of Colorado Denver. They also run the US Boston Conference every year, and founded the NKH US Leadership Board, a collection of US NKH charities to ensure funds are being used effectively and strategically.
  • The Nora Jane Foundation
    Run by the Almany family and based in Missouri, their mission is to raise awareness, raise money for research and support NKH families. They’re part of the NKH US Leadership Board.
  • Brodyn’s Friends
    Run by the Leslie family, based in Ohio, their mission is to find an NKH cure and raise awareness to help support NKH families. They’re part of the NKH US Leadership Board.
  • Lucus John Foundation
    Run by the Culp family, based in Arizona, their mission is to raise awareness for rare disease and gene therapy, fundraising for research and scholarships for families. They’re part of the NKH US Leadership Board.
  • John Thomas Foundation
    Run by Cynthia Graham and Tom Swoboda, based in Missouri, their mission is to help families affected by NKH and fund research in hopes of finding a cure. They’re part of the NKH US Leadership Board.
  • Smiles for Miles
    A Pennsylvania based charity, run by the Bunner family. Their mission is to raise awareness of NKH and other orphan paediatric genetic diseases, raise awareness of CVI (Cortical Vision Impairement) and raise funds to support families and research.
  • Hope for NKH
    Run by the Harris family, based in Pennsylvania. Hope for NKH isn’t as active in the NKH charity scene as it was, but it’s facebook page is still relatively active for connection with the NKH community, particularly on remembrance day.
  • Les Petits Bourdons
    Based in France, run by Bruant family, they’re support network of NKH families in France. They share resources, referrals and raise funds for research.

Support Networks

  • The Foundation for NKH Welcome! It’s the first NKH patient information website, run by Team Mikaere (but always looking for contributors!). We aim to put as much information as we can about NKH and how to live with it in one place. It’s a work in progress, be kind to us 🙂
  • NKH International Family NetworkThe NKH IFN, (currently) run by the Hulance family (previously the Underwood family, and other previous NKH families. It was founded by MaryLou Holcomb-Chandler and family, it was the very first NKH network, pre-internet. Currently it’s used to introduce newly diagnosed families to the NKH Community, specifically the facebook pages.
  • NKH Deutsches Familien Netzwerk The NKH Deutsches Familien Netzwerk, run by the Pollack family and the Müller family, is a loose network of NKH families in Germany. They provide general support and connection, offering the occasional gathering and newsletter.
  • The Drake Rayden Foundation
    The Drake Rayden Foundation is a charity based in South Carolina and run by the O’Sullivan family. Unfortunately, due to their lack of transparency and unwillingness to have open, honest conversations about their funding and whether research funded by them will be available to NKH community we can’t in good conscience recommend them (read more, here). However, The Drake Rayden Foundation does provide help to NKH families who need financial support.

Metabolic/Rare Disaease/Genetic Charities

Facebook Groups

NKH is a rare disorder spread across the globe. However, there is a strong community of NKH parents on Facebook. The NKH parents club is not a club anyone joins willingly, but once in we are fiercely supportive of our own.

Community Sites/Groups

Personal Groups + Blogs