The multifaceted challenges within nonprofit cultures and the threats that nonprofits face, particularly the dangers of siloed information and the reluctance to embrace change, with Sarah Quillen, Executive Director of the International Lyme and Associated Diseases Society (ILADS) Quillen, who has a background in fundraising and public relations. She shares the complexities of managing an organization focused on Lyme disease—a condition often misunderstood and underfunded, particularly in regions like the West where awareness is low.
Sarah begins by educating us on Lyme disease, explaining its severe and often debilitating effects on patients. She highlights the challenges in diagnosing and treating Lyme disease, saying that many patients go years without proper diagnosis, leading to significant health and quality-of-life impacts. Organizations like ILADS support research and medical education and advocate for better understanding and treatment of this and associated diseases.
This informative dialog then shifts to the concept of nonprofit culture. Sarah offers that nonprofits should be redefined as “for impact” organizations, which more descriptively amplifies the importance of strong infrastructure and strategic vision in fulfilling their missions. She notes that the nonprofit sector often operates under the misconception that minimal administrative spending is ideal, which can be detrimental to long-term success. “You exist to make an impact…when we all work together and all have one unified purpose, that is how we all succeed,” she says.
Sarah then shares with host Julia Patrick her experiences in leading ILADS through a significant cultural shift, particularly after succeeding a long-serving executive director. She speaks candidly about the challenges of bringing together a team that was previously siloed and emphasizes the importance of collaboration, both within the organization and with external partners. You will see from this fast-paced conversation how fostering a more inclusive and open environment has helped ILADS grow stronger and more cohesive, even in the face of daunting challenges.