Advocacy
Advancing the FamilieSCN2A Foundation’s mission by amplifying the voice of the SCN2A community and ensuring patient perspectives are at the center of science, policy, and care.
Empowering the SCN2A Advocate
“Every voice, every post, every act of participation moves us closer to awareness and change” – Amanda Gale, FamilieSCN2A Program Manager
The FamilieSCN2A Foundation works closely with advocacy partners to help empower our families to become strong advocates! Whether it’s sharing their story, raising awareness of SCN2A-related disorders, or lobbying for change with legislators, we are here to encourage and support personal advocacy goals!
Patient Advocacy & Bioethics
The FamilieSCN2A leadership team advocates for initiatives across multiple domains – patient, regulatory, government, clinical, educational, and research – while fostering meaningful connections with families, partners, and decision-makers.
Melody Kisor, Director of Advocacy, is a board certified patient advocate and bioethicist, with a special interest in helping families make informed decisions about clinical care and research.
Please reach out if we can assist!
Regulatory Advocacy
The U.S. Food & Drug Administration (FDA) actively engages with patient advocacy groups like FamilieSCN2A to ensure that the patient and caregiver voice is considered in their work. The FDA relies on the information shared by patients and caregivers to help them at all stages of the drug development process, including clinical trial design, outcomes assessments, and product approvals.
Please visit the Patient-Centered Drug Development page to learn how FamilieSCN2A has successfully engaged with FDA.
Government & Legislative Advocacy
We work closely with our families and advocacy partners to help ensure SCN2A representation on the local, state, and federal level.
Upcoming events:
February 24, 2026 – SCN2A Awareness Day
February 24 – 26, 2026 – Rare Disease Week on Capitol Hill
February 28, 2026 – Rare Disease Day
February, 2026 – Rare Disease Day at NIH
February, 2026 – Rare Disease Day at FDA
Clinical Advocacy
Comprehensive resources to help clinicians and other professionals understand the complex needs of caring for people with SRDs.
School & Disability Advocacy
The FamilieSCN2A Foundation creates and curates resources from trusted partners to help families advocate for their children.
Research Advocacy
The FamilieSCN2A Foundation supports critical research efforts through funding, recruiting, and consulting to ensure the patient voice is fully represented in study design. Visit the Key Publications page to learn more.
