We are pleased to announce the appointment of Olivia Chelko as our new Executive Director. With more than 20 years of experience in healthcare nonprofit leadership, Olivia brings a strong track record of advancing mission-driven organizations through strategic planning, successful fund development, and effective communications, all rooted in a commitment to patient-centered care.
Together with the Foundation’s dedicated volunteers and patient-led Board of Directors, Olivia will guide key initiatives including community and physician education, advocacy, and the launch of the international patient registry, the ileak registry℠. Her expertise in fund development, grant management, stakeholder engagement, and impact reporting will support the Foundation’s long-term sustainability and broaden its impact.
Olivia brings deep experience in advocacy at the local, state, and national levels, including HIV advocacy where she worked with Patient and Community Advisory Boards and university-based researchers to advance care, treatment, and vaccine development. She has led organizations focused on HIV, homelessness, domestic violence, and childhood injury prevention, always centering the needs of vulnerable and often unheard populations. Her work is rooted in a deep commitment to elevating patient voices and ensuring they shape programs, policies, and systems of care.
Known for her collaborative leadership and ability to connect people and systems, Olivia has led social work teams and partnered with nonprofits to improve access to essential services including housing, food, transportation, healthcare, and mental health. Her understanding of the critical role wraparound support plays in health outcomes continues to guide her approach and commitment to health equity. Throughout her career, she has worked closely with nonprofit boards, both as an executive and a board member, building strong teams and committees, leading statewide coalitions, driving strategic fundraising, and advancing systemic improvements across healthcare and human services.
“Olivia brings a deep dedication to community-driven impact. Her leadership will be instrumental in broadening our reach, deepening our advocacy, and accelerating progress for the spinal CSF leak community,” notes Board President Jodi Ettenberg.
In Olivia’s own words: “I’m honored to join the Spinal CSF Leak Foundation at such a transformative moment. This is a patient-led organization grounded in compassion, science, and advocacy. I’m inspired by the strength of this community and look forward to working alongside patients, families, clinicians, and community partners to create lasting change.”
The Foundation is the only nonprofit organization in the United States solely dedicated to raising awareness, advancing research, and improving outcomes for those affected by spinal CSF leak and intracranial hypotension. With the right diagnosis and access to the right testing and treatments, more patients can achieve an improved quality of life.