A different path doesn't have to mean a smaller life.
Susan Finazzo speaks about parenting, disability, advocacy, inclusion and raising children with possibility.
Susan brings together lived experience, years of advocacy, and a long history of speaking on behalf of families navigating rare disease and disability. As a mother and caregiver, she understands the realities behind the policies, systems, and conversations that affect children and families every day. Her work has taken her from school communities and parent groups to national conferences, fundraising stages, media interviews, and conversations with federal regulators—always with the goal of making complex issues more human, practical, and connected to real life.
Why Susan
Signature Topics
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How adults' expectations shape the possibilities children see for themselves.
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Parenting, uncertainty and learning to build a meaningful life without knowing exactly where the road leads.
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How schools and communities can help children participate, belong and contribute.
Susan also develops talks and conversations for healthcare professionals, researchers, patient organizations and industry teams on patient experience, clinical decision-making, meaningful patient engagement, caregiver perspectives and building trust with families.
Who Susan Speaks to
• Parent organizations
• Schools & educators
• Healthcare communities
• Rare disease organizations
• Nonprofits
• Family conferences
Speaking & Advocacy
Caregiver Speaker
FDA CBER Patient Listening Meeting #2 Patient and Care Partner Perspectives on Early Enrollment into Gene Therapy Clinical Trials for Rare Diseases
Participated as a caregiver speaker, sharing the family perspective on early enrollment in gene therapy clinical trials for rare diseases.
Panelist
2024 FUTURES National Conference, hosted by CureDuchenne
Participated in Action is Therapy panel sharing family perspective.
Duchenne Education & Inclusion Presentations
Schools, PTA groups, faculty and students
Presents to school communities about Duchenne, inclusion, accessibility, and practical ways to support children with changing physical needs.
Host & Keynote Speaker
Napa in Miami Fundraiser — 2022, 2023 & 2025
Hosted and delivered the featured address at Napa in Miami, which has raised nearly $3.5 million for CureDuchenne since 2021.2024 FUTURES National Conference, hosted by CureDuchenne