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About Us

Leading the fight to end NKH, supporting those impacted
every step of the way

NKH Crusaders was founded to confront the realities faced by individuals and families living with Nonketotic Hyperglycinemia (NKH), a rare and complex genetic disorder that affects every aspect of life. Families navigating NKH often encounter limited treatment options, scarce research funding, and a lack of coordinated support. NKH Crusaders exists to close those gaps through action, advocacy, and community.

We are driven by the belief that no family should face NKH alone and that progress is possible when research, resources, and lived experience come together.

Our Mission

At NKH Crusaders, our mission is to drive research toward better treatments, advanced medical technologies, and ultimately a cure for Nonketotic Hyperglycinemia (NKH). We are dedicated to supporting the NKH community by providing educational resources, caregiver support, scholarships to patients, and essential items not covered by insurance, empowering patients and families to live with strength, dignity, and hope.

NKH Crusaders Logo

What We Do

NKH Crusaders focuses on meaningful, measurable impact through three core pillars:

Fund the Research

We drive progress by funding research initiatives that advance understanding of Nonketotic Hyperglycinemia, improve treatment options, and support the development of better therapies and medical technologies. By investing in research, we help ensure NKH remains visible, prioritized, and moving forward.

Caregiver Support

Families caring for individuals with NKH face complex, lifelong challenges. We provide direct support through caregiver resources, scholarships, educational opportunities, and assistance with essential needs that are often not covered by insurance. Our goal is to reduce isolation, ease daily burdens, and strengthen families throughout their journey.

Advocacy

We amplify the voices of NKH families through education, awareness, and community engagement. By advocating for increased research attention, informed care, and broader understanding of NKH, we work to create lasting change for those impacted by rare disease.

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NKH Crusaders Leadership

NKH Crusaders is guided by a dedicated leadership team, board of directors, and advisors who bring professional expertise and lived experience to advance our mission with integrity and accountability.

Holly Glass-Burgess

President

Kristin Archibald

Executive Director

Janeen Barnett

Board Member

Sandra Mills

Legal Advisor

Debbie Cromp

Vice-President

Patrick Halfich

Board Member

Emma Berquist

Medical Advisor

Ryan Archibald

Executive Vice-President

Jeff Barnett

Board Member

Mackenzie Gamble

Medical Advisor

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