The LEAP into Advocacy Summit convenes rare disease patients, caregivers, advocates, healthcare professionals, researchers, partners, and allies to explore emerging innovations in rare disease, strengthen patient-centered advocacy, examine state and federal public policy, and share actionable strategies that translate knowledge into measurable impact.
The 2026 theme—Transforming Knowledge and Innovation Into Real-World Impact—reflects a growing urgency across the rare disease ecosystem: discovery and data alone are not enough. Progress happens when research, lived experience, policy, and collaboration are intentionally connected to practical action that improves outcomes for individuals, families, and communities.
This year marks an exciting milestone as the LEAP into Advocacy Summit becomes a hybrid event for the first time. Participants may join virtually or attend in person at the University of Alabama in Huntsville College of Nursing, creating new opportunities for connection, collaboration, and engagement across disciplines and geographies.
Registration opens soon.
This event is approved for 6 CEs through the Alabama State Board of Social Work Examiners. E.WE Foundation Provider License #0704.
*All times are Central Standard Time.
WEDNESDAY, JUNE 24, 2026 | Welcome Reception | University of Alabama in Huntsville, College of Nursing
6:00 – 8:00 PM | Pre-Summit Meet & Greet
Come enjoy music and food in a relaxed, relationship-driven kickoff designed to connect patient advocates, researchers, clinicians, students, community leaders, and sponsors.
THURSDAY, JUNE 25, 2026 | Summit Day | University of Alabama in Huntsville, College of Nursing + Virtual
8:30 – 9:30 AM | Networking Breakfast (In-Person Only)
Complimentary continental-style breakfast and networking.
9:30 – 9:45 AM | Opening Remarks | Sarita Edwards, MHA, President & CEO, The E.WE Foundation
This session sets the foundation for the day, highlighting the summit’s purpose, how each session builds toward shared outcomes, and how participants—both in-person and virtual—can engage intentionally.
9:45 – 10:30 AM | Keynote: Translating Rare Disease Discovery Into Patient Impact | Susan Hiatt, Ph.D. , Research Faculty Investigator, Greg Cooper Lab, HudsonAlpha Institute for Biotechnology
This session provides a strategic, real-world perspective on how advances in rare disease research, data, and care delivery move beyond discovery into meaningful patient and family outcomes. Participants gain insight into the translational pathways that connect innovation with lived experience, highlighting what it takes to close the gap between research and impact.
10:30 – 11:30 AM | Lightning Round: Turning Programs Into Progress | Lena Lutz, Undergraduate, University of Alabama at Birmingham, Genetics and Genomics Sciences; Cierra Sather-Jennings, Financial Advisor, Wells Fargo Bank; Allison Spratley, Executive Director, The Enrichment Center
This session will demonstrate how structured programs and partnerships convert ideas into action. Through three focused talks, participants see practical examples of how education, support, and financial sustainability initiatives operate in real-world settings to strengthen advocacy, resilience, and access.
LEAP | From Knowledge to Action—Building Advocacy Skills That Work | Lena Lutz
Illustrates how education becomes effective advocacy and how knowledge translation influences policy, systems change, and community-level outcomes. Participants gain practical insight into advocacy skill-building strategies.
ZEBRA | Centering the Human Experience—Mental Health and Support That Sustains Advocates | Allison Spratley
Highlights patient- and caregiver-focused mental health and support interventions that reduce burnout, build resilience, and sustain long-term engagement in advocacy and care. Participants gain insight into approaches that prioritize well-being and strengthen support networks.
STRIPE | Navigating the Cost of Care: Financial Literacy and Sustainable Support | Cierra Sather-Jennings
Explores how financial literacy and equitable support models help individuals and families navigate the economic impact of healthcare. Participants gain insight into approaches that promote stability and sustainability beyond traditional systems.
11:30 AM – 12:30 PM | Family-Centered Care in Practice: Navigating Rare and Complex Pediatric Care | Elizabeth Barnby, DNP, ACNP-BC, FNP-BC, CRNP, Clinical Professor, UAH College of Nursing; Beth Kirby, MSN, RN, RNC-NIC, C-ELBW, Small Baby and Palliative Care Coordinator, Huntsville Hospital Women and Children, Neonatal Intensive Care Unit; Billye Rene Sprague, CRNP, RN, MSN, FNP-C, The Bridge Program, USA Health Children’s and Women’s Hospital
This session examines how coordinated, compassionate approaches across healthcare, education, and community systems improve outcomes for both children and their caregivers. Through two complementary perspectives, followed by an in-depth fireside chat, presenters will highlight practical models that center the family as a partner in care—not just a recipient of services.
12:30 – 1:30 PM | Networking Lunch (In-Person Only)
Enjoy a catered lunch while connecting with fellow advocates, families, and professionals.
1:30 – 2:15 PM | Why We Show Up: Student Voices in Advocacy and Innovation | Grace Fagan, Undergraduate, University of Alabama at Birmingham, Genetics and Genomics Sciences; Rachel Seady, DNP, FNP-C, Clinical Assistant Professor, UAH College of Nursing
This session explores the personal motivations driving students’ interest in advocacy, research, and healthcare innovation. Students will share their “why” and reflect on how mentorship, education, and engagement can turn passion into meaningful impact.
2:15 – 3:15 PM | Policy in Practice: Turning Advocacy Into Legislative Priorities | Jennifer Harris, J.D., Senior Health Policy Advocate, Alabama Arise; Annie Kennedy, Chief Mission Officer, EveryLife Foundation for Rare Diseases; Sarah Waldinger, Policy Director, A+ Education Partnership
This session provides an overview of key Alabama state and federal policy issues affecting rare and disability communities. Participants will gain clarity on policy decisions, ways to engage, and how to translate awareness into action.
3:15 – 4:15 PM | Stories That Shift Systems: Advocacy Through Lived Experience | Ashley Perkins, PharmD, EdS, CPh., We Matter Too, Inc
This session explores how patient and caregiver stories—when shared strategically—can influence research priorities, policy decisions, and institutional change. Participants will learn ethical storytelling practices and effective messaging techniques that resonate with decision-makers.
4:15 – 4:30 PM | From Insight to Action: Summit Takeaways & Call Forward | Sarita Edwards, MHA, President & CEO, The E.WE Foundation
This closing session will highlight a synthesis of key themes, actionable next steps, and opportunities to stay engaged beyond the summit.
The E.WE Foundation 