NEWS AND ANNOUNCEMENTS

John Thomas NKH Golf Classic, Bear Creek Golf Club, Wentzville, Missouri.

University of Colorado Research to Fund Potential "Game Changer" for NKH Treatment

SAVE THE DATE FOR THE 13th annual John Thomas NKH Golf Classic on June 6, 2025.

NEW!! CLICK HERE TO VIEW IMAGES FROM THE 2024 GOLF TOURNAMENT!

CLICK HERE TO VIEW IMAGES FROM THE 2023 GOLF TOURNAMENT!

CLICK HERE TO VIEW IMAGES FROM THE 2022 GOLF TOURNAMENT!

CLICK HERE TO VIEW IMAGES FROM THE 2021 GOLF TOURNAMENT!

University of Colorado Research to Fund Potential "Game Changer" for NKH Treatment

Dr. Johan Van Hove and his team at the NKH Research Lab are pioneering new treatments, including a combination of two new, groundbreaking compounds that together could normalize brain glycine levels, which current treatments cannot achieve. This breakthrough has the potential to be effective for most, if not all, individuals diagnosed with NKH. As NKH is an orphan disease, funding for research largely depends on contributions from those affected.

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University of Colorado Research to Fund Potential "Game Changer" for NKH Treatment

John Thomas NKH Foundation to Help Fund Gene Therapy Research at Notre Dame

Please help us to meet our mission of helping families affected by NKH and funding research. 100% of your donation goes towards helping NKH families with medical expenses and theraputic and assistive equipment. Any amount is helpful!

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John Thomas NKH Foundation to Help Fund Gene Therapy Research at Notre Dame

As of July, 2020, the John Thomas NKH Foundation has entered into a 5 year agreement with the University of Notre Dame in order to support gene therapy research of the NKH disease.

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Families Celebrate NKH Awareness Day All Across the Country

John Thomas NKH Foundation to Help Fund Gene Therapy Research at Notre Dame

Families Celebrate NKH Awareness Day All Across the Country

NKH Awareness day is May 2, 2024. Families across the country and the world will celebrate our NKH warriors. Please consider a small donation for NKH Awareness Day to help those who battle this disease every day. Thank you!

Donate for NKH Awareness Day

Find Other NKH Foundations and Resources

John Thomas NKH Foundation to Help Fund Gene Therapy Research at Notre Dame

Families Celebrate NKH Awareness Day All Across the Country

Check out a list of other NKH foundations throughout the country and other great resources.

Resources and More

About Us

WHO WE ARE

OUR PARTNERS

WHO WE ARE

The John Thomas NKH Foundation is a 501(c)(3) charitable, public foundation. We were founded in 2012 and are based just west of St. Louis. Our goal is to help families affected by the NKH disease as well as help fund research that hopefully will lead to a cure for this horrible disease.

MISSION

OUR PARTNERS

WHO WE ARE

Our mission is to help families affected by the NKH disease as well as fund research in hopes of finding a cure.

OUR PARTNERS

The John Thomas NKH Foundation is proud to partner with Cardinal Glennon Children's Foundation. Each year we donate thousands to help meet the needs of children and families affected by NKH.

As of July, 2020, the John Thomas NKH Foundation has entered into a 5 year agreement with the University of Notre Dame in order to support gene therapy research of the NKH disease.