Fractional Executive Leadership Helps Rare Disease Nonprofit Leverage Philanthropy
Have you ever played the “lottery game?” It can be fun to dream big as you and your friends consider what to do with a $1 million winning ticket. Now think about what your nonprofit might do with such a windfall.
That’s exactly what happened to a very small organization charged with raising funds for research to develop treatments for an ultra-rare genetic condition. Nonprofits that support those impacted by ultra-rare diseases – ailments affecting fewer than 1,000 patients worldwide – face a uniquely uphill climb. They are usually founded by patients and their family and friends out of a deep need for community. Because the number of sufferers is so small, their only hope is to band together to gain the attention of researchers and research investors.
This particular nonprofit was completely volunteer led, raising about $35,000 a year, when an anonymous donor approached them with an offer to invest $1 million in their infrastructure.
The board felt that the logical next step would be to recruit an executive director but were concerned about making a full-time hire without some preparation for the transition from a small, volunteer-run organization to a professional nonprofit. They reached out to More Than Giving, a fractional staffing firm led by CEO Vicki Burkhart, for guidance.
Vicki connected them with Christine Novak Micka, one of the firm’s fractional experts, to help this group of dedicated volunteers grow into their newfound budget. Chris has experience with rare disease and health care organizations. Vicki was confident that she would be an excellent fit for this organization.
“These groups must do more than identify the need for research,” Chris notes. “They must also connect their cause to the larger rare disease community. It’s the only way they can hope to get noticed by researchers and the industries that will ultimately develop and produce treatments.”
“This organization was about to go from raising very small gifts to managing a $1 million budget,” Chris continues. “If these funds were going to have the impact everyone hoped, the board needed more than an executive leader. They needed a path to professionalization that we are currently supporting through fractional staffing.”
Chris began with a three-month organizational assessment. “There was so much to do that the board was becoming overwhelmed,” she says. “We needed to prioritize what could be done now, and what could be pushed down the road for future action. This period also served as an orientation, a time for me to get to know the organization and for us all to learn how best to work together.”
“I love strategic planning and building community, and I have a strong fundraising background,” Chris adds. “I also tend to hit the ground running and move forward quickly. It was important for us to align our pace. Most of the volunteers are coping with their own careers and caregiving in addition to their work at the organization. I use a monthly map of deliverables to keep everyone moving forward while also managing expectations. I encourage everyone to make room for self-care as well.”
During the assessment period, Chris also guided the board from an operations mindset to a vision mindset. “They are hard workers, but their task-heavy loads were leaving them too exhausted to focus on the bigger picture – building a sustainable organization with the potential to have a meaningful impact on the quest for effective treatments.”
In January, Chris stepped into the role of the organization’s fractional executive director. “By that time, we were all ready for me to take on day-to-day operations, overseeing board committees and donor relationships. I handle the nitty-gritty, giving the board room to focus on strategic priorities and direction.”
Just six months later, the organization has an operational structure that moves like its own machine. They are developing a research council, taking a deeper dive into fundraising, and are getting ready to launch a five-year strategic planning process. Understanding of and commitment to the organization’s core mission has never been stronger.
“It has been exciting to see this group grow from task orientation to a focus on vision and potential,” she says. “Meeting agendas are no longer a laundry list of updates. Instead, we have lively discussions about the future, about leveraging philanthropy and expanding the board in new ways.”
The organization has already doubled its fractional executive director contract, and Chris is confident that they will expand their fractional team as they pursue new communications and fundraising strategies. Global initiatives are on the horizon as well. Their angel donor, impressed with the organization’s progress, has committed an additional seven-figure gift.
“I feel privileged to be part of this nonprofit’s journey,” Chris says. “We were able to make incredible strides in a short amount of time with an investment that didn’t break the budget. The board was empowered to create change, and to use their resources to drive the science forward. This is joyful work.”
Click here to learn about More Than Giving’s fractional executive leadership options.