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Leading with Lived Experience: Reframing Vision, Brand & Case for Support w/ Bernice Martin Lee
65 Plays1 year ago
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
Recommended
Transcript
Introduction
00:00:05
Speaker
Welcome to the Abundant Vision Fundraising Podcast. Whether you are a seasoned professional or a first-time fundraiser, we have the advice you need to take your next step toward major gift mastery. I'm your host, Tom Dauber, president of Abundant Vision Philanthropic Consulting.
00:00:25
Speaker
Well, good morning. This is Tom Dahmer with the Abundant Vision Fundraising Podcast. I am so pleased to have my friend and colleague, Bernice Martin Lee, or as we like to call her, Bea, on the show today. Bea is the CEO of the Epilepsy Foundation. And it's just so wonderful to have you with us today, Bea. Well, thanks, Tom. It's so good to be here with you.
00:00:47
Speaker
Well, my
Bea Martin Lee's Career and Personal Background
00:00:48
Speaker
goodness. So we we had a great time working together in the past and it's it's been so awesome to see your, if you don't mind me saying, meteoric rise in the nonprofit world as CEO there. um I follow you on LinkedIn, you know, I see on Facebook, you're you're at places, you're doing things, you're all over the you're all over the country, maybe the world even, ah in the White House, meeting with all sorts of people.
00:01:15
Speaker
That's amazing, B. Congratulations. Thank you so much, Tom. It has been an amazing journey with epilepsy foundation. I could not be prouder of the work of my team and what we're doing in the community.
00:01:27
Speaker
I'm sure I, well, we're all proud of the, and you know, I, I don't have epilepsy, ah but you know, my, my nephew is living with it. ah That's more of a recent thing that that's been diagnosed. And then even my dog apparently is having seizures now. So all sorts of things. Surprisingly, it's very common in dogs. Yeah. Yeah. Well, anyway, enough about all that.
00:01:53
Speaker
Tell us about yourself when you're not, you're leading the charge in the treatment and and cure of epilepsy. What do you do when you're, when you're not in professional mode? Well, you know, Tom, from our relationship, you know, my first job is a wife and mother, right? I'm raising three amazing children. I'm all adults now. And you know, married to my wonderful husband, Phillip.
00:02:20
Speaker
And other than that, I'm still very active in activities around social services, particularly children. That's fantastic. Now, tell me about your role as CEO.
Becoming CEO and Embracing Health Equity
00:02:34
Speaker
What's all involved and how did you get where you are today? Sure. Well, it's the ironic story. of but I'll start with how I got here. A good friend of mine, and you may know her, her name is Sabrina Horton.
00:02:48
Speaker
She was a colleague of ours at Ohio State. you know right Her and I have become good friends and she actually nominated me for this position. oh And i I got a call from the recruiter and I immediately felt felt a little outed because as you know, I had not discussed my epilepsy openly, particularly with my colleagues and in the workplace because of the stigma that typically follows someone living with epilepsy.
00:03:19
Speaker
And she initially reached out because she knew I had a keen interest in health equity. And I was a little nervous about the position when they initially reached out to me. um I didn't know if I was ready to tell the world about my condition because of the stigma I have faced throughout my life living with epilepsy. I was diagnosed, I had my first seizure at 19 and I was diagnosed at 21.
00:03:48
Speaker
with epilepsy. and And from that point on there, I've had incidences in the workplace where I have faced discrimination andigma and So over the course of my career, I just learned not to disclose. So when they initially reached out, I kind of hemmed and hawed about it, but she said something to me that was really important. Sabrina did. She said, you know, the you have always championed health equity. This is how you can use your lived experience to move the needle for those in the community.
00:04:18
Speaker
And she was absolutely right. 40% of individuals living with epilepsy are from brown and black communities. And it is a very, very unknown statistic in our community, right? And there's such a lack of access to care. And she was absolutely right that this was somewhere where I could make a difference. So um after several months of interviewing, I was offered a lot the job last July and I've been in my role just about a year.
00:04:46
Speaker
That's wonderful. Well, it's it's great to be here celebrating 12 months on the job with you, Bea.
Epilepsy Foundation's Mission and Vision
00:04:53
Speaker
And so in the world, I mean, you asked what my role in TEL is. You know, we are an organization, that we are a national organization of also 26 affiliates across the country in five regions. And so my role in TEL is making sure that we are spreading our mission foreign wide and also communicating with our community.
00:05:16
Speaker
directly. And our programming includes education, advocacy, research, and connection. Connection is so important because 3.4 million people live with epilepsy in our country, 470,000 children. However, what we hear most from our community is that they feel isolated and the alone. So opportunities for the community to come together and be empowered is what we are trying to accomplish at the Epilepsy Foundation. I see. Wow. Well, that's important work for sure. What well else would you like to share with our audience today about the Epilepsy Foundation and its mission? Yeah. So I'll start with our vision. This year we took on the awesome responsibility of redefining the foundation and who we are and what we mean to our community and to others. um So our new vision statement really speaks to that isolation.
00:06:14
Speaker
And our vision statement is so that no one faces epilepsy alone. and that is the mission That is the vision of the foundation. And our mission statement is just as I said, to improve the lives of individuals affected by epilepsy through education, advocacy, research, and connection. And the word affected is so important because that also extends to caregivers, family members, and colleagues that are helping individuals in the community who are living with epilepsy.
00:06:43
Speaker
So again, the foundation supports not only the individual living with epilepsy, but also their entire support system. Wow. Wow. That's, that's excellent.
Challenges and Leadership Transition
00:06:55
Speaker
Well, I can only imagine not having been a CEO of a foundation that the transitioning from being a major gift officer, even a chief development officer, you know, to CEO is a big one.
00:07:08
Speaker
Yeah. what What are some of the biggest differences in those roles? Were there any that were particularly challenging to you? I really believe that being a major gift officer in nonprofit and in medical fundraising really helped me understand what was necessary for an organization to be successful in a fundraising space. And as you know, Tom, what's most important is that you have a clear mission and you have a clear case for support.
00:07:37
Speaker
So what was challenging for me when I came into the organization was I didn't find those two things. Right. And so usually I'm on the other end. I was on the other end of just making sure that I was able to communicate that to donors. But in this role, I had to actually create it and de define it. Wow. And so that was how I spent my first year is redefining the foundation's vision mission and our strategic plan.
00:08:07
Speaker
and building out a case for support so that our fundraisers could have a clear path forward in how and why we were fundraising to support individuals living with epilepsy. I'll bet your fundraisers were very grateful for that work that you did. They were. they actually They were very grateful because prior, I mean, they are a fantastic team. And despite not having those tools, they were very successful. They met goal each year, but the goal was stagnant.
00:08:37
Speaker
they weren't able to grow. And as you know, as a fundraiser, it's so important to be able to talk about impact, right? But also to get people clear outcomes and deliverables regarding programming. And that was something that they were struggling with prior.
00:08:57
Speaker
Yeah. Wow. Well, you were preaching to the choir here b because, you know, as as I work with nonprofits, I'm always, that's, that's basically what I'm telling them, helping them figure out what in the world are we trying to do and how do we communicate that clearly? It's so, so crucial. Yeah. We had, we actually took it one step further than our strategic plan and we went, we just completed a branding workshop and not branding in the sense of,
00:09:26
Speaker
you know, logo, colors, things of that sort. But in the sense of what is our message? What are we trying to communicate to the to the public? And how are we doing that consistently, right? And and what is the organization's DNA? You know, what is our DNA? And then allowing ourselves to message from that DNA, right? And the message that we we landed on is that where empowered journeys begin, right? And so everything we talk about talks about the foundation through that lens. We are where, whether that be um a physical location or virtual, empowered journeys begin, meaning where you can find information, education, where you can be find tools to become an advocate in your own community. And and we understand that the journey with epilepsy
00:10:26
Speaker
ebbs and flows, right? For instance, I have been seizure free since 2015. However, at any moment, I know I could have a seizure, right? Even reaching seizure freedom. And that is the journey, you know, diagnosis to to possibly seizure freedom, to living with epilepsy in a different way, if it should return, right?
00:10:53
Speaker
And then also individuals who are unable to reach seizure freedom because we are the epilepsy's, right? We are, sort of our population is drug resistant. So their journey is different and it may lead to surgery, whether that pre resectioning surgery and or device implementation. So we recognize the journeys for epilepsy are so different and varied.
Community Engagement and Personal Insights
00:11:18
Speaker
but they all should be empowered. Tom Dobber here for Abundant Vision Philanthropic Consulting. Fundraising can be hard work and it can be hard to mentally get into the place you need to be in order to see new opportunities. Everyone struggles with it. We are like the fish in the fishbowl who just can't see the water they're swimming in. That's when having outside expertise comes in handy.
00:11:42
Speaker
For 25 years, I've been helping nonprofits analyze the challenges, discover new ways forward, and develop clear plans that lead to greater fundraising
00:12:02
Speaker
Check out AbundantVision.net. One of the reasons we do this is so that and less experienced fundraisers, and and that includes CEOs of of smaller nonprofits, people that don't have that background, can learn some things. Like they normally would working in a big shop rubbing shoulders with with other nonprofit professionals.
00:12:22
Speaker
I'm curious, is there a piece of advice that you might share with you know the CEO of a smaller nonprofit about going through this visioning, revisioning process, going through this the case statement building sort of process that you did? but my My number one advice would be to make sure you are talking with the community you are serving. and As you mentioned, this year, I spent 132 days on the road. Wow. Yeah.
00:12:52
Speaker
But it was so key because I was not just talking to the leaders of our affiliates and the leaders of our chapters. I was talking to the families and individuals yeah and bringing that information back to my board of directors so that we had a clear picture of the individual we were serving and how best to serve them. Sometimes, as you know, Tom, with best intentions,
00:13:16
Speaker
we think we know what the what the needs of the community are, but we don't ask the people who are actually living with the issue. That's right. That would be my number one advice is make sure when you're going through that process that you are actually talking with the client and getting that feedback from them along the way, every time like we we when we were thinking about the vision statement, we focus grouped it, right? Does this resonate with you?
00:13:45
Speaker
Is this something that would bring you closer to the foundation? And we we were we were really blessed that in most cases it was yes, but there were times where they were like, good this word doesn't feel good to me, right? Or when we change from, people were saying, seizure freedom should be the goal. And our community was saying,
00:14:08
Speaker
No quality of life, because quality of life is different for every individual. And for example, example one family said to me, whose son has and a rare epilepsy, the days that he can read a story with his brother and smile is quality of life for us. He's never going to reach Caesar freedom. He has hundreds of seizures a day. But those days where he's not so medicated that he can be a part of our family.
00:14:37
Speaker
That's quality of life. So again, my biggest advice is make sure you're talking to your community. Yeah, yeah, I couldn't agree more with that. That's that's great advice. Now you've touched on this a little bit already, but I'll never forget the day when you came out on LinkedIn as an individual with with epilepsy.
00:15:00
Speaker
As your former manager, I can tell you I had no clue at all. And I i felt like what you did was such a brave thing to share something so personal yeah in that public space. Can you talk a little bit about the process that you went through in deciding to do that? So again, I recognized in taking on this role, there was a need to be transparent about my lived experience.
00:15:28
Speaker
because I recognize to be able to empower others, I had to share my story, right? I had to share my story to let others know that you, and I use the phrase a lot to live without boundaries, right? and Epilepsy is a, can be a condition of subtraction. You know, there are moments you can't drive. You can't swim. You can't hold this job. You can't drink.
00:15:55
Speaker
You can't do this. There's several things that there's a lot of cans living with epilepsy. And it was important in my role and what I've done over my career to help people understand, but there are a lot of cans, right? There are a lot of things that you can do as long as you prioritize your safety. Even now, my life has changed dramatically. I'm i'm on the road a lot. i matt With my epilepsy, my sleep was very important.
00:16:25
Speaker
and hydration is very important. And I have to be very transparent. To be honest with you, I had a call the other night with our board of professionals, what your which are our neurologists and epileptologists who support the organization. And I was not feeling well. And I know it was because I had started at 7 a.m. that morning. This call was at 5 p.m. I had not really left my desk.
00:16:53
Speaker
because I was on call after call after call. So I hadn't eaten, I hadn't really had enough water and I hadn't rested. And I had to be very transparent in that meeting and say, you know, right now i'm I'm experiencing symptoms. That was a hard conversation to have because I know there were times in my career where if I called in and said, I wasn't going to make it, I was like, I'm just sick, but I may have experienced a seizure, right? Or, um,
00:17:21
Speaker
And how do you tell an an employer, I am experiencing an aura, which means I may have a seizure. Cause this, we don't understand that word. Yeah. Yeah. And you, and, and what we find in our community, um, and me sharing my story, I've i've learned of others who, who absolutely have the same experience of you never want to seem unreliable. Yeah. Right. You don't want to seem like you're not, that that that you're not up for the job.
00:17:50
Speaker
So sometimes we push ourselves beyond our limits. And I'm here to tell people that it's okay to take a break. It's okay to take care of yourself first, right? And that that doesn't define your professionalism, right? Taking care of yourself does not define your professionalism. And for a long time, quite honestly, Tom, I didn't take that advice, right? I didn't take that advice.
Donor Relationship Management and Fundraising Metrics
00:18:18
Speaker
I would push myself because I felt like having epilepsy meant that I could not be the professional that people wanted me to be or need me to be in a lot of cases. Wow. That's that's pretty heavy stuff there, B. I appreciate you sharing that. So you again, you just touched on this, so it's kind of a good segue. If you could go back and talk to your younger self all the way back in the early part of your major gift officer days,
00:18:50
Speaker
Is there any advice you'd give to yourself to help you prepare to become the leader you are today? Oh man, so much advice I would give myself. i agree
00:19:04
Speaker
But the biggest, that I think the most important advice I would give myself is remember this is a marathon and not a sprint. Yeah. And sometimes your, your tenaciousness,
00:19:16
Speaker
And the goal that has been set for you will push you to move relationships much faster than they're ready for, right? And what I've learned over my career is that a good fundraiser lets the donor lead, right? And there were times in, you know, early in my career as a medical fundraiser, I was so focused on my goal that I lost sight of the relationship.
00:19:46
Speaker
Yeah, that's I think that's helpful. I you know there's there's a individual that i'm I'm getting to know fairly well a little bit. We've had him on the podcast and he's another consultant like me, but he's very accomplished and he spends a lot of his time talking to like universities, you know, flagship universities, those sorts of things. And and that's really his message is is don't don't lose the relationship.
00:20:16
Speaker
you let the donor lead those sorts of things. And he and I have had a conversation about, well, because what he sees is people kind of wagging the dog with the metrics. That that is making the metric, driving things to to hit goals, those sorts of things with without prioritizing that relationship and and in honoring the donor. and And he and I tend to give opposite advice and i And I finally realized that it's not because I don't value the relationship, because I agree with almost everything he says, but but we're working with different organizations. A lot of times I'm working with organizations that have never been intentional, yeah never been missional. They've never had metrics before. And so but they're all relationships. They're they're all heart. You know, you know, like we say, fundraising is a is an art and science. That's right. Art and science.
00:21:13
Speaker
And the science part are the metrics, are the moves management, right? And the art is understanding how to move the relationship to meet those metrics. Yeah. Yeah. I have just found that when that relationship is built in the right way, it's lasting. And that is a donor that will stay with you and not only with you, but we'll stay with the organization in the mission and we'll grow with the mission in the organization as well, right?
00:21:43
Speaker
they're the donor that is going to be there long term. I think unfortunately metrics that sometimes allow us to, you know, once we close that gift, the next. Yeah.
00:21:56
Speaker
Right, forgetting that that individual is still and it's still important to foster that relationship. That's all the time we have today, but be sure to tune in next week to hear the next part of this exciting conversation. Now, if you've enjoyed this podcast, please be sure to subscribe and give us a five-star rating on your podcast provider. I'm your host, Tom Daubert. Thank you for joining me.
00:22:21
Speaker
as we journey together towards Major Gift Mastery on the Abundant Vision Fundraising Podcast.