The Nutcracker Syndrome Association
Deatra Bear
Founder/Vice President:
With a long history of patient advocacy in the rare disease space, Deatra serves as Founder and Vice President of the Nutcracker Syndrome Association. After being diagnosed with Nutcracker Syndrome, she quickly discovered how difficult it was to find reliable information, trusted medical resources, or even a community of people who understood the condition. Recognizing the lack of a centralized place for patients to learn, connect, and access support, she began sharing awareness and advocacy through social media.
What started as a small effort to connect patients and share information quickly grew into a larger community. That grassroots initiative ultimately evolved into what is now the Nutcracker Syndrome Association. Today, as Vice President and a member of the Board of Directors, Deatra helps guide the organization’s strategic direction, advocacy efforts, and long-term vision while continuing to ensure the patient voice remains central to its mission.
About Deatra:
Deatra Bear is a student and student nurse researcher at the University of Colorado College of Nursing. She is also a rare disease advocate and nonprofit leader whose work focuses on improving how people with complex and under-recognized conditions find information, care, and support. Deatra has been involved in rare disease advocacy for several years and serves as a Young Adult Rare Representative (YARR) with the EveryLife Foundation for Rare Diseases, where she participates in national efforts related to rare disease awareness and policy.
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Her advocacy experience also includes previous volunteering with Dysautonomia International and the Ehlers-Danlos Society, supporting education, outreach, and patient-led work. In 2021, she participated in an Ehlers-Danlos Syndrome research internship, further shaping her interest in research and patient-centered care. Alongside research and advocacy, Deatra uses writing and creative expression to share patient perspectives. She was a 2025 Rare Artist finalist, was named a RARE Champions of Hope nominee in 2021 and 2022, and served as a patient speaker at the 2020 Ehlers-Danlos Society Conference, where she spoke about the realities of living with rare and chronic illness.
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Through her advocacy and research experiences, Deatra has seen how confusing and isolating the diagnostic and care process can be, especially for conditions that lack clear guidance or broad clinical awareness. Many patients are left searching for information on their own, facing long diagnostic delays and frequent dismissal of their concerns. In response, she founded The Nutcracker Syndrome Association to help make reliable information easier to access, connect patients with knowledgeable providers, and build a supportive community.
