Our Mission

Community Resonance Foundation is a nonprofit organization that works alongside patient advocacy organizations to ensure that community knowledge moves across the healthcare ecosystem without losing its meaning, integrity, or community ownership. We translate lived experience into formats that clinicians, researchers, policymakers, and health system leaders can understand and apply. This work strengthens the connection between community voice and the systems that shape care.

Our Role

Community Resonance Foundation operates as a mission aligned partner to patient advocacy organizations. We provide the listening, synthesis, and translation infrastructure that allows community knowledge to move across healthcare institutions without being simplified or misunderstood. Advocacy organizations remain the primary stewards of community voice. Our role is to help ensure that community perspectives are understood where decisions about research, care, and policy are made.

Why We Were Founded

Patient advocacy organizations hold deep knowledge about the realities of illness. This knowledge includes diagnostic journeys, barriers to care, treatment tradeoffs, and the daily experiences of patients and families. Yet most advocacy organizations operate with limited capacity to translate this knowledge into the structured formats required by healthcare institutions. At the same time, healthcare systems increasingly seek patient input but often lack the frameworks needed to interpret community experience accurately.

Community Resonance Foundation was established to close this gap. We support advocacy organizations as community knowledge moves into research, clinical practice, health policy, and payment systems. Our early work has focused on rare disease communities. However, the structural challenges we address extend across many health conditions and populations that face barriers to care and equity.

Our Vision

We envision a healthcare ecosystem in which lived experience is recognized as a vital form of knowledge. In this environment, community insight informs research priorities, clinical practice, health policy, and advocacy efforts. Community knowledge does not remain confined within advocacy spaces. Instead, it travels clearly across institutions so that those responsible for designing healthcare systems can better understand the realities patients and families experience.

Leadership

Community Resonance Foundation is guided by leaders with experience in patient advocacy, healthcare research, community engagement, and the communication of complex health issues across audiences.

Holly Jones

Holly Jones is the founder of HERstory In Color, a community organization supporting women of color living with multiple chronic illnesses. Diagnosed with polymyositis at nineteen, she spent years navigating the healthcare system without culturally relevant support. That experience shaped her advocacy. She launched the Myositis Women of Color community in 2020, which later became an affinity group within The Myositis Association. In 2021 she founded HERstory In Color to address the broader absence of community for women of color facing complex and often invisible health conditions. At Community Resonance Foundation, Holly brings community rooted advocacy experience and the perspective of building support networks in response to gaps in care and representation. Her leadership helps ensure the foundation remains accountable to the communities it serves.

Richard Juknavorian

Richard Juknavorian is a university innovation leader, digital health strategist, and champion for health equity and women’s leadership. As host of Rare Awareness Radio, he amplifies the stories of patients, researchers, and advocates navigating the rare disease landscape. He also created Meeting You Where You’re At, a Top-30 social impact podcast featuring bold, trailblazing women entrepreneurs. Across both platforms, Richard uses storytelling as a vehicle for empowerment, visibility, and real-world impact. As a co-founder of Community Resonance Foundation, Richard shapes storytelling and community engagement across its programs.

Scott Milligan, PhD

Scott Milligan brings more than two decades of experience in healthcare research, with deep expertise in observational and real-world evidence methods and stakeholder engagement. His work has spanned pharmaceutical companies, payers, and physician networks, with a consistent focus on how real-world and community experience can inform healthcare decision-making. At Community Resonance Foundation, Scott leads methodological development and the organization’s approach to translating lived experience into actionable, stakeholder-accessible insight.

Our Principles

  • Community Ownership — Communities retain authority over how their experiences and perspectives are represented.
  • Ethical Representation — Lived experience is documented and communicated accurately, respectfully, and without exploitation.
  • Methodological Integrity — Qualitative methods and narrative synthesis are applied with appropriate rigor and transparency.
  • Accessibility & Inclusion — Community perspectives are communicated in ways that are accessible across audiences.


We exist to ensure that the knowledge held within communities is not lost as it moves into the systems responsible for improving health.