Tuesday, February 10 

Future-Focused Leadership, a Pre-Conference Workshop 

Steve Swafford, EdD, IOM, Co-Founder, Leadership Outfitters 

This workshop led CEOs, executive directors, and board leaders through a structured strategic thinking process to help patient organizations prepare for the future. Participants examined emerging external forces, applied the strengths-based SOAR (Strengths, Opportunities, Aspirations, Results) framework, and practiced translating priorities into clear themes, goals, and measurable actions. 

Key takeaways 

• • Scan for “train whistles” to anticipate change. Boards should identify two to three critical shifts across regulatory, technological, cultural, or economic domains that require proactive action. 
  • Ground strategy in strengths using the SOAR framework. Clarifying strengths, opportunities, aspirations, and results helps align planning with mission and define success. 
  • Focus strategy around a small set of themes. Priorities such as financial sustainability, improved outcomes, and stronger partnerships create a clear structure for goal setting. 
  • Turn priorities into measurable actions. Converting high-level objectives into specific tactics, dashboards, or initiatives ensures progress can be tracked. 

Wednesday, February 11 

Opening Keynote: Built in the Fire: Reimagining the Future of Health Together 

 Dr. Jean Accius, President & CEO, CHC: Creating Healthier Communities 

In this opening session, Dr. Jean Accius explored how social and environmental factors—from food access to air quality to safe communities—shape health outcomes and underscored the role of leaders in driving change. Those closest to challenges are best positioned to create solutions, and local action is essential to achieving national impact. 

Key takeaways 

• • Proximity to communities drives meaningful change. Leaders closest to the issues have the insight needed to design effective solutions. 
  • Health inequities are systemic—and preventable. Addressing inequities is both a moral imperative and a necessity for a sustainable health system. 
  • Trust is foundational infrastructure for health. Building and maintaining trust is essential to improving outcomes and advancing equity. 
  • Business and societal impact can align. CEOs are increasingly supported in addressing social issues when efforts drive measurable change. 

NHC Member Reactor Panel 

Moderator:

• • Omar A. Escontrías, DrPH, SVP, Equity, Research and Programs, National Health Council 

Panelists:

   •  Rich Buckley, SVP, Corporate Affairs, McKesson
   • Sally Werner, Chief Executive Officer, Cancer Support Community
   • Steven Taylor, President & CEO, Arthritis Foundation 

Session summary
Leaders from NHC member organizations reflected on the opening keynote, sharing practical perspectives on advancing equity and access within their organizations. Panelists highlighted the importance of empowering patients, leveraging partnerships, and using technology thoughtfully to expand reach while building trust at the community level. 

Key takeaways 

• • Empower patients to advocate for change. Motivated and informed patients can be powerful drivers of policy and system improvements. 
  • Leverage technology to expand access. Digital tools can help reach underserved populations when paired with attention to usability and trust. 
  • Trust-building requires sustained investment. Long-term community partnerships are essential but resource intensive. 
  • Broaden partnerships beyond traditional health care. Collaborating with schools, pharmacists, and community leaders can extend impact. 
  • Create space for lived experience. Centering patient stories strengthens engagement and informs better solutions.

Understanding Leadership at the Top: The CEO–Board Connection 

Moderator:
   •  Shawn Boynes, FASAE, CAE, Association Executive, Mental Health & Inclusion Advocate 

Panelists:
   • Abby Gorman, Principal, Heidrick & Struggles
   • Leah Howard, JD, President & CEO, The National Psoriasis Foundation
   • Vernetta Walker, JD, President & CEO, Vernetta Walker & Associates 

A panel discussion highlighted the CEO–board partnership as a critical driver of organizational success, framing governance as the mechanism that aligns strategy, oversight, and priorities. Speakers emphasized the importance of clear roles, strong engagement, and resilient leadership relationships. 

Key takeaways 

• • Boards must lean in as strategic partners to the CEO. Effective governance requires proactive engagement and shared leadership rather than a reactive approach. 
  • Trust is essential to avoid micromanagement. Clear boundaries between governance and management help maintain confidence and organizational effectiveness. 
  • High-performing boards tailor governance to their context. Structure, composition, and processes should align with strategy, with tools like task forces enabling agility. 
  • The CEO–Board Chair relationship sets the tone. A strong partnership creates alignment, shared language, and a more cohesive board culture. 
  • Accountability and support systems strengthen leadership. Regular board assessments, succession planning, and external support such as coaching help sustain both governance and CEO effectiveness. 

Putting Patients First: OBBBA Implementation and the Health Care Safety Net 

Moderator:
   •  Kelly Brantley, Independent Consultant 

Panelists:
   •  Tracy Garner, Chief Operating Officer, Easterseals
   •  Jack Rollins, Director, Federal Policy, National Association of Medicaid Directors
   •  Hannah Wesolowski, Chief Advocacy Officer, NAMI 

This session examined what is top of mind at CMS as implementation of H.R. 1 (One Big Beautiful Bill Act or OBBBA) moves forward, highlighting timelines, policy priorities, and potential impacts on coverage. Speakers emphasized the need for early preparation and advocacy as states and stakeholders navigate funding pressures and new requirements. 

Key takeaways 

• • Implementation timelines are moving quickly. Community engagement and work requirements are expected to take effect January 1, 2027, requiring organizations to prepare now. 
  • States will face increasing fiscal pressure. Funding constraints may shape policy decisions and coverage dynamics in the coming years. 
  • A stronger disability definition is critical. Clear criteria will be essential to protect individuals at risk of losing coverage under new requirements. 
  • Advocacy ahead of rulemaking is essential. With an interim final rule anticipated midyear, stakeholder engagement in the near term will be key to shaping outcomes. 
  • Assess community readiness now. Understanding existing relationships, resources, and tools will help organizations respond to emerging questions and needs. 

Future-Proof Your Mission: Creative Approaches to Funding Growth and Diversification 

Moderator:
   •  Susan Gaffney, Executive Vice President, National Health Council 

Panelists:
   •  Jessica Edwards, Chief Development Officer, NAMI
   •  Richard Sperry, Chief Strategy Officer, GBS|CIDP
   •  Michael Pearlmutter, Chief Executive Officer, EveryLife Foundation for Rare Diseases 

Panelists discussed how organizations can build more resilient funding models through intentional diversification, emphasizing that sustainable growth requires long-term investment, mission alignment, and embedding development across the organization rather than treating it as a standalone function. 

Key takeaways 

• • Diversification is a long-term strategy, not a quick fix. Building individual, planned, and partnership-based revenue streams takes sustained investment but provides greater flexibility and stability. 
  • Protect mission integrity when pursuing growth. Clear guardrails ensure new funding aligns with organizational values and does not dilute purpose. 
  • Use strong funding periods to invest in new streams. Moments of financial stability are the best time to expand and test diversification strategies. 
  • Make development an organization-wide responsibility. Shared accountability across leadership, programs, and policy teams strengthens prioritization and results. 
  • Transparency strengthens trust, especially for umbrella organizations. Clearly communicating an additive role and demonstrating stewardship supports member retention and credibility. 

Breaking the Maze: The Future of Patient Navigation  

Interviewed by:
   •  Randy Rutta, Chief Executive Officer, National Health Council 

Guest Speaker:
   •  Jennifer Goldsack, Chief Executive Officer, Digital Medicine Society (DiMe)

This session examined how advances in data, connectivity, and digital tools—especially AI—are reshaping patient navigation and access to care. Jennifer Goldsack discussed the need to address gaps in diagnosis and care pathways, while highlighting the role of innovation, investment, and thoughtful implementation in improving patient experience and outcomes. 

Key takeaways 

• • Navigation challenges persist at critical moments in care. Patients often struggle when no clear treatment pathway exists or when conditions are identified too late for optimal intervention. 
  • Technology can enable more personalized and efficient care. Tools such as telehealth, remote monitoring, and triage models can prioritize complex patients while improving system efficiency. 
  • Innovation requires alignment between mission and market. Demonstrating both patient impact and commercial viability helps attract investment and accelerate adoption. 
  • Implementation is the biggest hurdle. Successful solutions depend on educating partners, integrating into workflows, and ensuring tools meet real patient needs. 
  • Equity must be built into innovation from the start. Engaging communities and designing inclusive solutions ensures new models of care work for everyone. 

Breakthrough Showcase 

Hosted by: 
   •  Tracy Hart, Chief Executive Officer, Osteogenesis Imperfecta Foundation
   •  Brian Smith, Executive Director, Alliance Development/Strategic Advocacy, Merck & Co. 

In this rapid-fire session, CEOs and senior leaders shared brief stories highlighting pivotal breakthroughs that advanced their organizations’ missions. The stories span policy wins, program innovations, scientific milestones, and new approaches to improving access and care delivery. 

Key takeaways 

• • Data and lived experience can drive policy progress. Leaders highlighted using evidence and patient insights to advance agendas such as support for family caregivers. 
  • Innovation is expanding access and equity. New programs, technology platforms, and funding strategies are helping reach underserved populations and improve affordability. 
  • Scientific and clinical breakthroughs remain central to mission impact. Advances in treatments, approvals, and research continue to transform patient outcomes. 
  • Storytelling reinforces the value of advocacy and investment. Sharing tangible successes helps build momentum for continued progress across the ecosystem. 

Thursday, February 12 

Bold Moves in Changing Times: How Leaders Are Reinventing the Work 

Moderator:
   •  Calaneet Balas, President & CEO, The ALS Association  

Panelists:
   •  Beth Battaglino, Chief Executive Officer, HealthyWomen
   •  Jorey Berry, President & CEO, Immune Deficiency Foundation
   • Chuck Henderson, Chief Executive Officer, American Diabetes Association

Leaders are adapting to a rapidly changing environment by embracing risk, experimentation, and new partnership models. In this session, speakers emphasized that organizations succeeding today are expanding audiences, diversifying revenue, and increasing transparency while staying grounded in mission and values. 

Key takeaways 

• • Lead with agility in a constantly shifting landscape. Evolving programs, testing new platforms, and accepting ongoing disruption are essential to staying relevant. 
  • Reach new communities through unconventional partnerships. Collaborations with digital creators, platforms, and nontraditional partners can unlock new engagement and fundraising opportunities. 
  • Transparency strengthens trust and growth. Open communication about impact and decision-making builds loyalty and supports new funding models. 
  • Diversified revenue supports resilience. Expanding beyond traditional funding sources creates flexibility and long-term stability. 
  • Strong governance and empowered teams enable transformation. Boards that support calculated risk and leaders who align teams around clear priorities are better positioned to navigate change.

Meeting Audiences Where They Are: Strategies for the Digital Age 

Moderator:
   •  Lilly Stairs, Board Chair, Autoimmune Association 

Panelists:
   •  Joanne Pike, DrPH, President & CEO, Alzheimer’s Association
   •  Jason Resendez, President & CEO, National Alliance for Caregiving
   •  Jerry Rogers, Editor & Host, RealClearPolicy & RealClearHealth

This panel explored how patient and caregiver organizations can use digital tools and communications strategies to build stronger relationships with their communities. Speakers discussed blending data, storytelling, and thoughtful technology use to deepen engagement, influence policy, and demonstrate impact. 

Key takeaways 

• • Digital tools can strengthen relationships across the care ecosystem. Building closer connections among patients, caregivers, and clinicians is essential to meeting evolving needs. 
  • Positive, human-centered storytelling drives engagement. Highlighting hope and lived experience alongside challenges helps resonate with audiences and reduce barriers. 
  • Make policy personal to broaden support. Connecting policy issues to real-world impact helps move conversations beyond ideology and strengthens advocacy. 
  • Pair data with narrative for maximum impact. Evidence builds credibility, while stories make messages memorable and actionable. 
  • Measure both reach and outcomes. Tracking operational metrics alongside policy or mission impact helps demonstrate value to boards and stakeholders. 

The New Drivers of Connection: Evolving the Patient-Provider Experience 

Remarks by:  
   • Dr. John Whyte, Chief Executive Officer and Executive Vice President, American Medical Association 

Interviewed by:
   •  Michael Osso, NHC Board Chair, President & CEO, Crohn’s & Colitis Foundation 

In a fireside chat, NHC Board Chair Michael Osso and AMA CEO Dr. John Whyte discussed how evolving patient–clinician relationships, technology, and trust dynamics are reshaping the health ecosystem. The conversation highlighted opportunities for collaboration, the importance of prevention and innovation, and the role of patient organizations in strengthening engagement and education. 

Key takeaways 

• • • Patient–clinician relationships must be collaborative. Empowering patients with information and dialogue fosters shared decision-making rather than paternalistic care. 
    • Trust in health and science requires sustained effort. Patient organizations play a key role in education, combating misinformation, and meeting audiences where they seek information. 
    • Policy and payment models must evolve with care delivery. Workforce shortages, prevention efforts, and telehealth expansion require updated reimbursement and regulatory approaches. Prevention efforts require a more long-term view of health.  
    • Innovation depends on supporting research and adoption. Advances in AI, telemedicine, and clinical trials offer major opportunities if systems adapt to integrate them effectively. 
    • Partnership and clear leadership drive progress. Working across sectors, proposing solutions, and staying grounded in mission enable organizations to influence change.