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Leading with Lived Experience: Reframing Vision, Brand & Case for Support w/ Bernice Martin Lee
Description
In this episode, Tom sits down with Bernice Martin Lee ("Bea"), CEO of the Epilepsy Foundation and a former major gift officer and CDO, to talk about what happens when a fundraiser steps into the CEO seat and brings her own lived experience with epilepsy to the center of the mission.
Bea shares how she went from keeping her diagnosis private because of stigma to publicly naming it on LinkedIn and using her story to champion health equity for a community that often feels isolated and unseen. She walks through her first year as CEO, where she led a full reset of the Foundation's vision, mission, strategic plan, and case for support, including the powerful new brand idea: "where empowered journeys begin."
In this episode, you will learn:
- How Bea moved from major gift fundraising into the CEO role at a national health nonprofit
- Why she chose to disclose her epilepsy publicly and how that transparency has empowered others
- How she led the Epilepsy Foundation through a full re-visioning of mission, vision, and strategic plan
- What it looks like to build a clear, compelling case for support when it does not already exist
- How listening tours, focus groups, and 132 days on the road shaped their new direction
- Why their community pushed them to center "quality of life" instead of only "seizure freedom"
- How the brand idea "where empowered journeys begin" guides messaging, programs, and fundraising
- Practical advice for small-organization CEOs on involving the community they serve in case-building
- The leadership lesson Bea would tell her younger fundraiser self: treat fundraising like a marathon and let the donor lead the pace
If you lead a nonprofit, especially in health or social services, this conversation will give you a concrete picture of how to connect lived experience, community voice, and disciplined strategy in a way that makes fundraising stronger and more honest.
Want to learn more about the work of the Epilepsy Foundation?
https://www.epilepsy.com/
Looking for Fundraising Coaching?
Check out www.abundantvision.net