Our Founder
Kristin lives just outside of Boston with her husband Bill and their family. She is a proud mother of three sons who are now stepping into adulthood, building families and futures of their own. Their home has always been grounded in faith, resilience, and an unwavering commitment to one another. Kristin is the President and Founder of NKH Crusaders, an organization born from her family’s personal journey with Nonketotic Hyperglycinemia.
Kristin was introduced to NKH in 2004 after the birth of Thomas. Delivered at 36 weeks, Thomas struggled from the start. He was sleepy, unable to feed well, and later diagnosed with pulmonic stenosis. At three weeks old, he was hospitalized with a severe infection, and a spinal tap revealed elevated glycine levels. Because he did not fit the classic profile, concerns were dismissed. Over the next several years, Thomas endured repeated hospitalizations, drop seizures, feeding difficulties, delayed milestones, and was given last rites twice. It was not until a dedicated nurse practitioner at Boston Children's Hospital revisited his chart and pursued genetics testing that the missing piece was found. Months later, the diagnosis came: Atypical NKH.
Following diagnosis, Thomas began treatment with sodium benzoate and dextromethorphan, along with a structured seizure plan. His tone improved, the drop seizures stopped, and with extensive speech and feeding therapy he transitioned to eating by mouth and communicating. Thomas also lives with Common Variable Immune Deficiency, making treatment uniquely complex, as some immune therapies contain glycine. Today, Thomas is 21 years old. Through determination and an incredible support team, he continues to overcome challenges and live a full and meaningful life.
In 2010, driven by a refusal to accept that no research was being done for such a devastating disease, Kristin founded NKH Crusaders. What began as a grassroots effort grew into a global movement. In December 2023, NKH Crusaders led a group of eight NKH parents and caregivers in a formal presentation to the U.S. Food and Drug Administration, giving families the opportunity to share firsthand the realities, burdens, and urgent needs of the NKH community. In May 2025, after receiving the Chan Zuckerberg Initiative Rare As One Grant, NKH Crusaders officially became an independent 501(c)(3) nonprofit organization. Since its founding, NKH Crusaders alongside the NKH community has helped raise over $1 million for research efforts in the United States, while also launching the first international NKH Patient Registry to prepare families for future clinical trials.
Kristin’s leadership is rooted in listening, connecting, and advocating boldly. NKH Crusaders is often the first call families receive after diagnosis, helping them connect with leading physicians and with other parents who understand the isolating reality of rare disease. Through research funding, patient engagement, and community building, Kristin continues to carry forward the conviction that started it all: never give up, and never let a rare diagnosis silence a family’s voice.
