The Nutcracker Syndrome Association
LJ Dong
“Queen with One Bean”
Director of Patient Advocacy:
The Director of Patient Advocacy helps ensure that the voices and experiences of patients remain at the heart of the Nutcracker Syndrome Association’s work. As a member of the Board of Directors, this role brings the lived perspective of the patient community directly into organizational leadership and decision-making. The Director of Patient Advocacy helps guide conversations around educational resources, messaging, and future initiatives, while also identifying gaps in support and highlighting the evolving needs of patients and families. By bringing the patient voice into leadership spaces, this role helps ensure the Association continues to grow in a way that truly reflects and serves the community it was created for.
About LJ:
LJ Dong is a nationally recognized advocate, educator, author, speaker, and survivor/leader whose work bridges lived experience, mental health education, and patient empowerment. Known to many as “Queen with One Bean,” LJ is also a kidney donor and longtime mentor with the National Kidney Registry, where she supports and guides patients and families navigating complex vascular compression disorders and transplant journeys.
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Her connection to Nutcracker Syndrome (NCS) is deeply personal. After years of medical uncertainty and debilitating symptoms, LJ made the unprecedented decision to donate her kidney, a choice that not only saved a life but also alleviated her own condition. Her case challenged conventional medical thinking and has since become a powerful example of patient-led advocacy, resilience, and informed decision-making. Through her story, LJ has inspired hundreds of patients worldwide to pursue answers, seek second opinions, and advocate for themselves within the healthcare system.
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As a member of the NCSA (Nutcracker Syndrome Association) community, LJ is most excited to contribute her experience in peer mentorship, patient education, community building, and public awareness. She is passionate about helping individuals with Nutcracker Syndrome (NCS) feel seen, informed, and empowered, and she looks forward to collaborating with fellow advocates, clinicians, and survivors to expand access to compassionate, evidence-based support for the NCS community.
Explore LJ's Articles & Videos:
