Mission: Unite to build our ReNU syndrome community, raise awareness, and advance research
Vision: Empower families by providing resources, support, and hope for the future through pursuing the discovery of therapeutic treatment options
Values: Collaboration, Connection, Innovation, and Impact
ReNU Syndrome United is working towards many goals that align with our mission, vision and values, and we are incredibly grateful for our volunteers, partners, and sponsors that are supporting ReNU families.
Align & unite globally
Grow online communities
Facilitate virtual events
Create interactive map to encourage meet-ups & track global diagnoses
Plan inaugural conference
BUILD COMMUNITY
Cultivate social media presence
Continually evolve web presence & unify branding
Deploy awareness campaigns
Distribute guides for families & clinicians
Disseminate testing information
RAISE AWARENESS
Encourage unified registries
Generate scientific interest
Foster relationships with researchers & pharmaceutical companies
Partner to create Centers of Excellence to bridge research & clinical care
ADVANCE RESEARCH
ReNU Syndrome United
Volunteer Board Members
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Jessica Margrill
CO-FOUNDER & PRESIDENT
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Lindsay Pearse
CO-FOUNDER & VICE PRESIDENT
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Lauren Schwarze
CO-FOUNDER & TREASURER
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Heather Margrill, PMP
CO-FOUNDER & DIRECTOR
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Kristin Dolan, PhD
SCIENTIFIC STRATEGY LEAD
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Jessica Eddings, MHR
SECRETARY & DIAGNOSTIC ADVOCACY TASK FORCE LEAD
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Danielle Fulfree
CENTER OF EXCELLENCE LEAD