Ep. 093 – Finding Hope in the Unseen – A Story of Advocacy, Community, and Healing with Tara Kearns

In this episode of the It Matters Podcast, host Walter Perez welcomes Tara Kearns. Tara shares her journey from aspiring engineer to rare disease advocate after her sons were diagnosed with Progressive Familial Intrahepatic Cholestasis (PFIC). She discusses the challenges of navigating a rare diagnosis, building a supportive community, and balancing leadership with self-care. The conversation highlights the importance of resilience, vulnerability, and connection in advocacy, offering inspiration and practical advice for families facing rare diseases and personal hardships. Tara Kearns is a licensed social worker, educator, advocate, and most importantly, a mother. Working with children and families in the mental health field for most of her professional career, she entered the world of medical advocacy after her oldest son received a diagnosis of MRD3 deficiency, also known as PFIC 3. In 2016, she began working with two other mothers of children with multiple variations of PFIC to maintain the original website pfic.org, a grassroots online webpage created to share (very little at the time) information online. By 2018, The PFIC Advocacy and Resource Network, Inc. (The PFIC Network), a 501(c)3 non-for-profit organization was born. Since then, Tara has remained connected with the organization, not only as a Co-Founder, but has also served terms as Board Secretary, and as Vice-President of the Board of Directors. Currently, Tara serves as a Program Consultant with the PFIC Network, working to further organizational priorities and support its mission.