Our talented staff works with dedication and urgency to advance the Foundation’s mission and make a difference in the lives of chordoma patients.
Co-Founder and Executive Director
Josh was diagnosed with a skull-base chordoma in 2006. Unwilling to accept the limited treatment options available to chordoma patients, he joined the lab of Dr. Michael Kelley at Duke University, where he spent the next two years studying chordoma. There he experienced the very practical challenges faced by virtually all would-be chordoma researchers – insufficient funding; scarcity of tissue, cell lines and animal models needed for experiments; and isolation from others studying the disease. To solve these problems and proactively advance the search for a cure, Josh co-founded the Chordoma Foundation in 2007. Under his leadership, the Foundation has united and expanded the chordoma research community and vastly accelerated the pace of chordoma research. As Executive Director, Josh works with the Foundation’s research partners, advisors, and supporters to design, execute, and fund research initiatives focused on developing new treatments for chordoma.
Ask Josh about: Partnerships, media inquiries
Head of Philanthropy
Kenny joined the Chordoma Foundation in 2019. He has more than a decade of experience managing major gift fundraising, public affairs, and external relations for both for-profit and non-profit organizations. As the Foundation’s Head of Philanthropy, Kenny works with supporters and key stakeholders throughout the world to ensure the Foundation has the resources needed to facilitate critical research, support patients, and aggressively pursue a cure. Kenny has a BS in Political Science and dual master’s degrees in Public Affairs and Nonprofit Management from the University of Florida. Kenny is motivated each day by his Uncle Mike who fought a heroic battle with chordoma.
Ask Kenny about: Donations, fundraising
email: firstname.lastname@example.org | ext. 124
Daniel M. Freed, PhD
Head of Target Discovery and Translational Research
Dan joined the Chordoma Foundation at the end of 2020. He brings over 15 years of experience in cancer biology, translational research, and preclinical drug development spanning the academic and biopharmaceutical arenas, with expertise in understanding how the internal ‘wiring’ of cells changes during tumor development and progression. At the Foundation, Dan works to identify novel Achilles’ heels in chordoma that can be targeted therapeutically, providing rationale for new clinical trials. Throughout his career thus far, Dan has been a strong advocate of approaching biomedical questions using a variety of approaches at different resolutions — and hopes this philosophy will provide a comprehensive “molecules-to-patients” perspective of chordoma that will lead to new therapeutic options for those afflicted by this rare disease. Dan received his PhD from the University of Virginia, followed by postdoctoral training at the University of Pennsylvania’s Perelman School of Medicine and the Yale Cancer Biology Institute.
Ask Dan about: cell lines, PDX models, preclinical drug screening, therapeutic targets, drug repurposing
email: email@example.com | ext. 126
Larry joined the team in March 2015. He draws upon 20+ years of experience in operations and administration to assist the Foundation in multiple functional areas, including operations, accounting, customer service, and IT. Larry is committed to helping the Chordoma Foundation team operate as productively as possible, in service to the patients and community impacted by chordoma. Larry’s other passions are photography, cycling, and gourmet cooking.
Ask Larry about: Business process details
email: firstname.lastname@example.org | ext: 115
Kimberley de Haseth
Kimberley joined the Chordoma Foundation in 2021. A Dutch native, she and her family moved to the U.S. in 2014. Kimberley holds degrees in immunology and consumer marketing. Her expertise encompasses research, marketing, events, and program management; most recently prior to joining the Foundation, she served in a leadership role at another rare disease organization. As the Foundation’s Program Manager, she is focused on developing and delivering services and resources to meet the needs of the worldwide chordoma patient community. Kimberley’s past experiences have given her a deep understanding of the challenges faced by individuals affected by a rare disease.
Ask Kimberley about: International outreach
Andrea joined the Chordoma Foundation in February 2020. Andrea has been in the fields of health education and human services for more than 10 years, having obtained a Bachelor’s Degree in Human Development; Family Studies from UNC Greensboro and a Master’s Degree in Human Services from Capella University. She has worked for various public and private organizations, providing an array of services to children, adults, and families. Prior to joining the Foundation, Andrea spent several years as a patient navigator at Duke University Health System. Andrea is passionate about empowering patients and their families through education, resource connection, and reduction of barriers to patients receiving care.
Ask Andrea about: Patient Navigation, Peer Connect, Chordoma Connections, Doctor Directory, Tumor Donation Program
email: email@example.com | ext: 125
Shannon Lozinsky, MSW
Director of Patient Services
Shannon joined the Chordoma Foundation at the end of 2014. Shannon has been in the fields of social work and education for more than 15 years and has a Master of Social Work from the University of North Carolina at Chapel Hill. She has worked for a number of public and private social service organizations and spent time in private practice providing mental health services to children, adults, and families. Shannon is passionate about helping patients get the best possible care, educating the medical community about chordoma, and providing ways for the patient community to come together to support one another.
email: firstname.lastname@example.org | ext: 114
Head of Engagement
Sara joined the Chordoma Foundation as a science writer in 2020, becoming our Head of Engagement in 2021. She brings more than a decade of science communications expertise, most recently at Mayo Clinic, as well as an award-winning track record of audience engagement across digital platforms. At the Foundation, Sara serves as a bridge between the snowballing scientific progress and the members of our community who stand to benefit and whose support and participation make this progress possible. She holds a Master of Public Health degree from the University of Wisconsin.
Ask Sara about: Newsletter, website, social media, hosting a fundraiser
Director of Operations
Tammy joined the Chordoma Foundation in the spring of 2011, impressed with the energy, enthusiasm, and dedication of the staff, board, researchers, medical professionals, and patient community and their proven ability to produce results. A graduate of Duke University, she is happy to be back in Durham. As the Foundation’s Director of Operations, she manages business functions key to the Foundation’s success, including finance, regulatory compliance, vendor management, operations, and human resources. In addition to a passion for making a difference, Tammy brings to the Foundation over 17 years experience in corporate management, including oversight of finance, marketing, human resources, customer service, conferences, and executive-level planning. She is inspired daily by the opportunity to be part of a small group that thinks big.
Ask Tammy about: Business processes, finances, employment opportunities
email: email@example.com | ext: 106
Diane Ignar, PhD
Head of New Drug Development
Diane rejoined the Chordoma Foundation in 2020 having previously supported the nascent preclinical and clinical development pipeline in 2016. Diane brings over 25 years of experience in biopharmaceutical research and development. During her tenure at GSK, she led preclinical biology teams, clinical development programs and business development partnerships. She was President and CSO of Ostrea Bio which focused on novel lysosomal storage diseases therapy. Diane has fostered the North Carolina biotech ecosystem through her roles as a Duke University Mentor-in-Residence, a Board Director for the Council for Entrepreneurial Development and UNC Kickstart Advisor. Diane performed postdoctoral work in endocrine oncology at the NIH and was awarded a PhD in neuropharmacology from Duke University. She received her BS Pharmacy from Purdue University and is a Registered Pharmacist.
Ask Diane about: drug development, brachyury
Gillian has served as a communications consultant for the Chordoma Foundation since 2016. She brings more than 15 years of experience in health care communications, narrative development, brand messaging and third-party outreach to this role. As a consultant, Gillian helps to drive content development, message creation, and communications strategy for the Foundation and its various programs. She brings a passion for writing and storytelling to all aspects of her work and is very proud to be part of a to be part of this incredible team and community. Gillian is also the President of Parrish Public Relations. She previously served as Communications Director at medical research think tank FasterCures and as a Vice President on the healthcare team at Edelman.
Patient Engagement Specialist
Kaitlin was diagnosed with poorly differentiated chordoma in 2016. Her cancer diagnosis transformed her life and was a catalyst for her passion to work with children and families experiencing the challenges of illness and hospitalization. She has significant experience working with children and families in stressful situations as well as a background in child development and family dynamics. As our Patient Engagement Specialist, she leads a virtual group for adolescents and young adults, which helps meet the unique needs of this population. Kaitlin received a BS in Family Studies and Human Development from the University of Arizona and is currently pursuing her MS in Child Life and Family-Centered Care at Boston University.
Ask Kaitlin about: Adolescent and young adult group