Deana Simpson, MSN, RN is a nurse, advocate, and leader in the prion disease community whose life has been profoundly shaped by the impact of Familial Creutzfeldt-Jakob Disease (fCJD). After losing her mother and brother to the disease—and a total of 23 family members over several generations—Deana committed herself to supporting other families facing the devastating realities of genetic prion disease.

Following her mother’s death, she founded CJD Insight, an organization dedicated to helping individuals and families affected by CJD, with a special focus on the unique challenges of familial CJD.

Deana is also a founding member of Creutzfeldt-Jakob Disease International Support Alliance (CJDISA). In December 2015, she was appointed co-chair of the organization following the retirement of Florence Kranitz. In 2023, when CJDISA formally became a non-profit company, Deana was appointed as one of its Executive Directors. Through her leadership, advocacy, and personal experience, she continues to work toward greater awareness, support, and hope for families affected by prion diseases.