What it means to actually have a partner
Field Notes belongs to someone else this week.
Meg Poe runs the Autoimmune Encephalitis Alliance as its only staff member. We asked her to tell this story in BeMo and let BeMo shape it, which is exactly how she built the work she describes in it. What came back is the clearest account I have read of what it costs to be the only person who knows how an organization works.
By Meg Poe, Executive Director, Autoimmune Encephalitis Alliance
The reality of working alone
I am the Autoimmune Encephalitis Alliance. Not in an ego sense, in a very practical one. I am the sole staff member and Executive Director. The AEA was founded in 2012, and I have been here for five years. In that time I have become the single point of all things AEA: the programs, the relationships, the way we talk about autoimmune encephalitis and the people it affects, the institutional memory, all of it. That is not a complaint. It is just the truth of running a mission-driven organization at this stage.
My board is wonderful and supportive, and includes some of the top AE researchers and clinicians in the world. We are a one-person shop, but we are not a small presence. The people who are part of this organization, and the people who believe in what we are doing, are remarkable. When it comes to telling the full story of the AEA (what we do, why we do it the way we do it, what makes us different), that knowledge lives almost entirely in my head.
That is both a strength and a real limitation. I can answer any question about the AEA. But I cannot always access that knowledge fast enough, organize it clearly enough, or turn it into something a potential partner can read and immediately understand. That gap is where BeMo came in. BeMo is an AI thought partner built specifically for nonprofits.
Telling BeMo everything
I did not start with a project. I started with a conversation. Over a series of long chat sessions, I told BeMo everything: the programs, the history, the mission pillars, the community we serve, the clinicians we train, the researchers we support. BeMo listened, asked questions, and made assumptions, some of which were right, and some of which were not.
That process of being questioned, and occasionally corrected, turned out to be unexpectedly valuable. Seeing BeMo work with my information (sometimes getting it slightly wrong, then recalibrating when I pushed back) helped me see my own work more clearly. I found myself articulating things I had never quite put into words before. The knowledge base we were building together was not just for BeMo. It was clarifying things for me.
The shift that changed everything
Somewhere in that process, something clicked for me. When companies invest in a nonprofit, they often expect visibility in return: a logo, a mention, a presence in communications. That is a reasonable expectation. But when I looked honestly at what the AEA was offering, I realized we were offering something different.
When a company invests in the AEA, they are not buying placement. They are being invited to join a community that is working to change the future for people living with autoimmune encephalitis: patients, families, clinicians, and researchers all together. That is a meaningful distinction. Companies investing in an organization doing this kind of work deserve to expect more from that partnership, and we want to give them more.
That realization drove everything that followed. The word "sponsorship" came out. The word "partnership" went in. And we built from there.
Building the packages
The AEA's work organizes around three areas: supporting people with AE and their families, supporting clinician education and the AEA Clinicians Network, and supporting AE research and scientific discovery. Early on, BeMo and I were calling these Sponsorship Pillars. As we refined the thinking, it became clear that some of what the AEA does (the Storytelling Library, the Clinicians Network) serves all three audiences at once. These were not pillar-specific benefits. They were connective tissue that every partner would help fund.
We also made a deliberate decision to move away from a good-better-best structure. The patient community is not less valuable than the research community. Each of the three partner tiers needed to stand on its own as a meaningful and equal investment.
At one point BeMo used the word "Ecosystem" to describe the whole. I pushed back immediately. I had been hearing that word everywhere, and it did not feel like us. Then I remembered something: the AEA CARES model, which we had used in an earlier fundraiser. Community. Advocacy. Research. Education and Support. And the phrase that had always felt true to me: the whole AE community. BeMo mapped everything to that framework, and it fit.
The result was the AEA Industry Partnership Packages: three tiers (Community Partner, Research Partner, and Clinician Education and Networking Partner). At one point the Research and Clinician Education packages were ordered differently. After more reflection, we switched them. Small decision, right framing.
The document and the deadline
There was a meeting coming up. I wanted to walk in with something finished, something I could hand to board members and potential partners and be proud of. That deadline focused everything.
I had been working in Canva, and at one point BeMo and I had 11 pages of content. We whittled. We cut what was important-but-not-essential and kept what was essential and irreplaceable. What we arrived at was a single 11x17 sheet that folds into four 8.5x10 pages: four pages, beautifully laid out, carrying everything that needed to be said.
These packages are nuanced in ways that are hard to overstate. The distinction between selling access to our community and inviting someone to join it is not a small one. It changes how every conversation goes. BeMo suggested we create a companion document: the AEA Industry Partnership Talking Points.
The Talking Points distilled hours of conversation and creation into something a board member could review and immediately understand: the nuances, the framing, the right way to talk about what we are offering when handing the summary to a potential partner. But they became more than a meeting prep tool. I review them before every phone call I have with a potential partner. I keep a printed copy on my desk.
What happened in the room
The board members selectively shared the Industry Partnership Package information throughout the two-day meeting, putting it in front of the people who needed to see it. They also took some copies to another meeting they had the following week, on their own, without being asked. At the next AEA board meeting, members commented that it was an incredible and beautiful document. They enjoyed sharing it.
That is not a small thing. A document people want to share, that they carry to the next meeting, that earns the word "beautiful" from people who did not build it: that is the result of getting it right.
What I actually learned about collaboration
I often tell BeMo that I could never have done this without BeMo's help. BeMo's response is consistent: it could never have done it without me.
Both things are true. I hold all the knowledge. I know the AEA the way only someone who has lived it and loves it can know it. BeMo cannot invent that, and it does not try. What BeMo can do is help me access it, organize it, surface the connections I had not articulated yet, and shape it into something another person can read and understand, faster than I could do it alone, and with less left out.
Could I have done this without BeMo? Probably. Eventually. But it would have taken far more time, it would have been less complete, and it would not have been nearly as enjoyable.
That last part matters more than I expected. Working on something hard with a genuine thought partner (one that asks good questions, pushes back when something is not quite right, and meets you where the work actually is): that changes the experience of doing the work. I did not expect to enjoy building an industry partnership framework. I did.