Emily Barnes

Emily Barnes brings more than 15 years of experience in nonprofit and agency communications, with a career that has spanned fundraising, brand strategy, creative campaign development, and digital engagement. Before joining the International Fibrodysplasia Ossificans Progressiva Association (IFOPA) as the Marketing Manager, she served as a partner at a boutique digital media agency, helping mission-driven organizations around the world elevate their impact through strategic storytelling and multi-channel marketing.

Emily has collaborated on global advocacy initiatives, large-scale creative campaigns, and complex website redesigns, and she is passionate about using communications to strengthen visibility and community engagement. An award-winning conference and workshop presenter, she offers insight shaped by working with nonprofits of all sizes—from local organizations to international networks.

Returning to the IFOPA is a meaningful full-circle moment after previously supporting the organization as an agency partner. She is especially committed to amplifying the voices of individuals living with FOP, families, caregivers, and healthcare professionals, and to building lasting relationships within the community.

Based in Kansas City, Emily enjoys thrift shopping, reading, cooking, and planning her next travel adventure. Most of all, she loves spending time with her two kids, who keep life joyful and exciting.