Nicci Peterson
Advancing PWS Research | Proud to Support Families Affected by Prader-Willi Syndrome
- Role
- Community Engagement at Foundation For Prader-Willi Research
- Location
- Lincoln, NE, US
- LinkedIn followers
- 500 followers
Experience
Community Engagement
Foundation For Prader-Willi Research
May 2025 — Present
As the Community Engagement Specialist at the Foundation for Prader-Willi Research (FPWR), I have the privilege of working alongside an extraordinary community of families, advocates, and researchers who are united by hope, resilience, and the shared goal of accelerating treatments for Prader-Willi syndrome (PWS).After my son Will was diagnosed with PWS in 2020, I experienced firsthand how isolating and overwhelming a rare disease diagnosis can be. The resources and connections I found through FPWR were a lifeline and they inspired me to make a deeper commitment to this community.In my role, I support and empower families to share their stories, build meaningful connections, and take action through awareness, advocacy, and fundraising. I help bring our mission to life by organizing grassroots campaigns, supporting family-led initiatives, and ensuring every family feels seen, supported, and equipped to make an impact.My background in marketing and technology has given me the tools to amplify voices and build movements, but it’s this community that gives my work purpose.Let’s connect and keep moving forward — together.
Education
University of Nebraska-Lincoln
Bachelor’s Degree, Marketing/Communications
2012 — 2016
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