Maida Brankman | Liminal Fund | 27 October 2015
In May 2015, at the one-year anniversary of Cohort 12's graduation, I contacted members of my cohort with an invitation to reflect on what they have learned since completing the TPW Intensive Program. This is a transcript of an interview with Karen Jordan, which has been edited for clarity.
Q: Take us back to the end of our intensive program last May. What was top of mind for you then?
KJ: I had two questions: one was how sustain and grow Carb DM, the non-profit entity that I helped start, and the other was how it fit into the bigger picture of the multitude of different Type 1 Diabetes organizations offering services in the Bay Area. I wanted to understand potential strategies not only to strengthen Carb DM, but also how to make the whole Type 1 Diabetes organizational ecosystem become more integrated. I wondered if that integration would be a way to support Carb DM as well.
Q: How have you made decisions about how you can have the greatest impact with your philanthropy? Given the range of possibilities that presented themselves this year, how did you decide what's in and what's out?
KJ: One impact opportunity was being asked to serve as president of the local JDRF chapter board. It was difficult for me to tease out and set aside the reasons I "should" do it, but the more I examined the opportunity, I realized it would involve more of an operating role with ED-type responsibilities than a role as president of the board. I was more interested in JDRF’s research activities so I declined the position. However it led to a subsequent invitation to join the JDRF National Research Committee, which was a better fit for my interests; the committee gives final approval for every grant over $500,000 and sets the overall research agenda for the donated funds ($98 million last year).
Q: Is it possible to imagine these events happening prior to our cohort experience and how you would have made decisions differently? Were there things we learned in the intensive that helped you think about these opportunities?
KJ: I'm not sure there's any one thing that we learned that impacted my decisions, but the fact that the program emphasizes taking a step back and looking at your entire basket of resources and how best to deploy them made me realize that I have more resources than I thought I did. It broadened my definition of what a resource is and encouraged me to look at the value of connections and relationships. The program also made it OK for me to be a little selfish and figure out that service means you're not just doing things to serve others but that it's a good thing to figure out how you can be most fulfilled, which will ultimately mean that you will be most inspired and effective.
Before the intensive I would have just reacted to situations like the invitation to lead the chapter board, but this year I took the time to think it through which left me open to the National Research Committee opportunity. If I were president of the JDRF chapter I wouldn't have been able to convene the other Type 1 Diabetes organizations in the Bay Area because I would have been viewed as having an assumed agenda.
Q: About the convening: how did you come up with the idea, and what actually happened?
KJ: This stemmed from thinking about how to make Carb DM sustainable, and my emerging understanding of all the different organizations and resources in Northern California. It also stemmed from confusion in the patient and medical communities due to the number of small organizations associated with Type 1 Diabetes and concern that there were valuable resources and services being offered that were being overlooked. Most organizations didn’t know the others existed and certainly hadn't talked to each other, and I thought it was important to gather as many organizations together as possible and explore opportunities to collaborate. I spoke with endocrinologists at the two major Bay Area clinics (UCSF and Stanford) and they were strong advocates for this effort as well.
So I sent an email to as many organizations as I could track down, inviting them to meet. I had no authority or sponsorship other than my own involvement with a couple of organizations and the relationships I had with others. I received referrals for additional people who should be involved and ended up with a large distribution list.
I spent a lot of time crafting that first email! There were a couple of issues I tried to be sensitive to: first, JDRF and ADA were both invited and they are the largest and most dominant Type 1 organizations in the area. I wanted to make sure all participants felt their voices would be heard. Second, given there were over 20 different organizations on the initial distribution whose leaders had different motivations and goals, I wanted to be clear that the tone was as welcoming and collaborative as possible. Also, I held the meeting at a neutral location (UCSF).
People started “replying all” that they would attend which built momentum. I tailored the agenda to spend more than half the time having people introduce themselves, talk about their organizations, and talk about their needs so that everybody felt they had air time. I tried to avoid giving the impression that I had a hidden agenda but did propose the group agree on two deliverables to work on after the meeting: first, a comprehensive list of all the organizations and their services, and second, a common calendar to help avoid events being scheduled on the same day and increase awareness for all the events. Both would attempt to simplify the communities’ access to information by providing a single source to consult.
A key, unanticipated factor was the involvement of a highly respected endocrinologist and researcher at UCSF who not only volunteered the meeting space and gave very supportive opening remarks, but also stayed for the entire meeting while on call. There's tremendous respect from the community for the medical professionals and the doctor stressed the importance of the messages I was trying to communicate and the deliverables I had proposed.
I was pleasantly surprised by the tenor and outcome of the meeting. Participants suggested building a website with information about each of their organizations that would have one general name as opposed to a name connected to any one of their organizations. Thus, clinics could say, "go to (for example) bayareatype1.org". It was also encouraging because participants signaled their desire to keep the community and patients front and center as opposed to serving their own particular organizations’ interests.
Q: What are the next steps for the consortium?
KJ: They were all highly interested in meeting semi-annually. I’m currently trying to organize a meeting for late October/early November. I'm also trying to figure out how to understand each leader’s different motivations and goals and what they would like to get out of the consortium then design the strategy and direction that serves their needs.
Q: What is your vision for the year ahead? How about three years out?
KJ: Three years out is a long time! Over the next year, for the consortium, I would like the group to build strong relationships and use them to actively seek out opportunities to partner and collaborate. It would also be great if the consortium could decide on its purpose and agree on a set of goals. I would like to complete both deliverables I described previously: making information about the different services and resources simple, clear and easy to access for the Type 1 community and developing a live, coordinated calendar.
For my own philanthropic journey, it’s definitely a work in process. As I learn more about the research in Type 1 being conducted, I’ve started toying with the idea of providing “seed” or accelerating grants to select research efforts. However, this is very preliminary thinking so I have quite a bit of homework to do in order to decide whether this is a productive direction. The intensive provided a framework and tools to help me productively explore different pathways and detours like this and the TPW network will provide a rich resource to consult with others who are following a similar direction.
Up next: I put myself on the hot seat.