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.
Values Statement
At the heart of the NKH Crusaders is a deep commitment to our shared values. These principles guide our actions, define our culture, and strengthen our community as we work together to support families affected by Nonketotic Hyperglycinemia.
Empathy & Compassion
We walk alongside families affected by NKH with deep empathy, honoring their lived experiences and offering steadfast support rooted in kindness, dignity, and grace
Courage & Advocacy
We meet the challenges of NKH with determination and advocacy. We courageously pursue research advancements, engage in difficult yet necessary conversations, and empower our community to hope, act, and strive toward a brighter future
Integrity & Transparency
We conduct all aspects of our work with honesty, accountability, and openness. Through clear communication and ethical practices, we build and uphold the trust of the families, partners, and supporters we serve
Commitment to Growth
We embrace continuous learning and evolution. By staying responsive to emerging science and community needs, we enhance our capacity to deliver high-quality resources, support, and leadership in the NKH space.
Joy & Celebration
We celebrate every milestone and intentionally seek moments of joy, recognizing their importance amidst the challenges of NKH. We foster a hopeful, connected community where light can be found even in difficult times.
Collaboration
We believe progress happens together. We actively partner with researchers, medical professionals, peer organizations, and advocates to expand our impact and accelerate breakthroughs for individuals living with NKH
Respect for All
We honor the dignity, diversity, and unique experiences of every individual in our community. We listen with care and ensure that all voices are valued, respected, and included in our mission.
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.
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 Helfrich
Board Member
Emma Berquist
Medical Advisor
Ryan Archibald
Executive Vice-President
Jeff Barnett
Board Member
Mackenzie Gamble
Medical Advisor