Chordoma Foundation

New Board committee formed to help drive programs that serve the chordoma community

The Chordoma Foundation is committed to continually improving our programs and services that strive to lessen the impact of the medical, emotional, and practical challenges faced by chordoma patients and their loved ones.

Our Patient Services provide:

  • Education: We provide multi-media educational content designed to help chordoma patients and caregivers understand chordoma and make well-informed treatment decisions.
  • Navigation: We help patients find and access the treatment and supportive care they need.
  • Support: We provide opportunities to connect with and get support from peers in the chordoma community.

Our Patient Services exist to create a better experience for individuals affected by chordoma throughout their journey with the disease. Our work in support of this goal includes creating a wealth of educational materials, offering our personalized Patient Navigation Service, and facilitating opportunities for peer learning and support.

In 2015, we were thrilled to begin formalizing and expanding our services to the chordoma community with the appointment of our first Patient Services Manager, Shannon Lozinsky. Over the last two years, Shannon and her team have made notable advances in our patient services work and have plans to scale, enhance, and expand many of our offerings over the next five years. In anticipation of continued growth and improvement of our Patient Services, our Board has formed a Patient Services Committee, which will guide and oversee the important work in this area.

The inaugural Patient Services Committee is comprised of four professionals with collective experience in patient navigation, health education, social work, nursing, hospital administration, palliative care, and patient-centered outcomes research. The committee is chaired by our Board member Dr. Paula Song, a health policy researcher at the University of North Carolina. Committee members will work with our Patient Services team to further refine the Foundation’s strategy for serving the needs of the chordoma community and will oversee implementation and evaluation of programs and initiatives to support that strategy. The Committee is also charged with reviewing the Patient Services annual budget and work plan, helping to ensure the efficiency and quality of our Patient Services programs.

The first meeting of the committee was held on June 30, 2017, and much work lies ahead. We are grateful to all of the members of the committee for lending their time and expertise to support the Foundation’s mission and look forward to working with them to make an impact in the lives of everyone affected by chordoma.

Meet the Patient Services Committee members

Paula Song, PhD – Chair

Paula H. Song, Ph.D. is an Associate Professor in the Department of Health Policy and Management in the Gillings School of Global Public Health at the University of North Carolina at Chapel Hill. Prior to joining the faculty at UNC-CH, she was an Associate Professor at the Ohio State University. Dr. Song’s research interests and publications focus on financial aspects in healthcare management and policy and their effects on the delivery and utilization of health care services. Dr. Song received her Ph.D. in health services organization and policy from the University of Michigan. She also holds a Master of Health Services Administration, as well as a Masters of Arts in Applied Economics, both from the University of Michigan, and a Bachelor of Arts in Biological Basis of Behavior from the University of Pennsylvania. Her father was diagnosed with chordoma in 2012.

Karen Cox, PhD, RN, FAAN

Dr. Karen Cox is Executive Vice President and Chief Operating Officer at Children’s Mercy – Kansas City. Children’s Mercy is an independent, nonprofit 367-bed pediatric health system, providing more than half a million patient encounters yearly with total revenues of $1.25 billion. She holds the inaugural V. Fred Burry, MD, and Sandra Hobart Burry Chair in Nursing Advocacy and Leadership. Dr. Cox’s clinical background was pediatric hematology/oncology/bone marrow transplant. She was one of the first certified pediatric hematology oncology nurses in the US. She recently served as Board Chair of the Health Care Foundation of Greater Kansas City, a $400 million foundation promoting quality healthcare for the underserved. Dr. Cox is a Fellow in the American College of Healthcare Executives (ACHE). She is also a Fellow in the American Academy of Nursing where she serves as President Elect (2016–2017) and President (2015–2019). Her nephew was diagnosed with chordoma in 2015.

Vickie Leff, LCSW, BCD, ACHP-SW

Vickie Leff, LCSW, BCD, ACHP-SW is a Clinical Social Worker with the Palliative Care Department at Duke University Hospital. She received her MSW from Simmons School of Social Work in Boston. She worked for many years as an oncology social worker at Beth Israel Hospital in Boston, as well as the Patient Services Director at the Massachusetts division of the American Cancer Society. She is on the Board of Directors of the Social Work Hospice and Palliative Care Network (SWHPN) and American Association of Clinical Social Work (ACSWA).

Mike O’Brien, MSW, LICSW

Mike O’Brien has more than 26 years of administrative experience in the healthcare field at a large academic medical center. Since 2004, Mike has administered the Office of Patient Health and Education for the Mayo Clinic in Rochester, Minnesota. He holds an additional appointment as the Administrator for Employee Community Health – Core Process Team. In 2009, he was named Education Administrator for the Department of Medicine, and in 2014, was appointed Assistant Professor of Medical Education in the Mayo Clinic College of Medicine. Mike holds Master of Social Work and Bachelor of Arts degrees from the University of Iowa.