Managing a rare disease nonprofit board with Geraldine Bliss

Geraldine Bliss has learned a lot since launching CureSHANK—a research advocacy organization working to expedite therapies for Phelan-McDermid syndrome. In the last five years, what started as an all-parent-run organization has expanded to include multiple strategic and scientific advisory committees. Now they’re getting ready to grow again, expanding their reach by bringing on new board members.

We sat down with Geraldine to talk about her experience running a rare-disease nonprofit—and how CureSHANK’s unique approach to building a board has helped them work quickly and efficiently to bring new treatments to those who need it.

Here are our top takeaways from our conversation with Geraldine:

1. Personal values and strategic alignment are closely linked

Since the beginning, CureSHANK’s board has been a bit different. Every member of their board is a parent of a child with Phelan-McDermid syndrome. On top of that, each board member also works internally within the organization.

While this structure isn’t typical of most organizations, it has come with a lot of advantages. For one, getting aligned behind priorities has been remarkably easy. Because every member of their board comes from a place of shared experiences and values, making decisions about where the organization should focus and invest has been easy. Personal conversations often bleed over and inform strategic priorities, which means disagreement is rare.

This has not only given them confidence in their strategic objectives, but also allowed them to move quickly and efficiently, knowing everyone is working in alignment every step of the way.

2. Expanding your stakeholder network is vital

While there are real benefits of having an all-parent board, it simply isn’t ideal for longterm growth. The truth is, a rare-disease nonprofit’s ability to scale is often limited by the size of their patient population—if you rely on patient stakeholders as your primary source of fundraising, and your patient population is only so big, at some point you’re going to hit the ceiling.

Growing your board outside of the immediate community you serve can help broaden your reach and expand your fundraising capacity. And that translates to increased awareness and better resources for your organization.

3. Streamlining communications is key

Because every member of their board also works for the organization, they stay in constant communication—with each other and with their scientific and advisory board. This is great, but results in many different communication threads spread across many different platforms.

To help keep things moving efficiently, CureSHANK has really invested in streamlining their communication practices, bringing all of their board-related communications into a single platform. This has not only made it easier to keep track of important information, but also enabled them to work more quickly, refocusing their time and energy on high-priority issues.

4. You absolutely have to take care of yourself

Streamlining processes can have impacts that reach far beyond the day-to-day work. In fact, it’s been vital to the mental and emotional wellbeing of everyone at CureSHANK.

Because every member of their board is personally passionate about their mission, there can be a tendency to learn in a little too much. It goes without saying that trying to run a nonprofit and take care of kids with extreme needs can be exhausting. And time and energy aren’t infinitely scalable—you have to find time to take care of yourself.