Genetics and Epidemiology of Chordoma
Dilys Parry, PhD – National Cancer Institute, Division of Cancer Epidemiology and Genetics

Donor Dollars at Work: An Overview of Chordoma Foundation Research Funding Strategy
Josh Sommer – Chordoma Foundation

A Mouse Model of Chordoma
Brian Harfe, PhD – University of Florida

The mTOR Pathway in Chordoma
Vijaya Ramesh, PhD – Massachusetts General Hospital

Developing Chordoma Xenographs
Jean-Paul Wolinsky, MD – Johns Hopkins University (representing David Loeb, MD, PhD)

Research Update
David Alcorta, PhD – Duke University (representing Michael Kelley, MD)

High Throughput Drug Screening for Chordoma
Chris Austin, MD – NIH Chemical Genomics Center

Biospecimens: the Key to Research that Leads to the Cure
Carolyn Compton, MD, PhD – NCI Office of Biospecimens and Biorepostiory Research

Banking on a Cure: Launching the Chordoma Foundation Biobank
Josh Sommer – Chordoma Foundation

Navigating the Medical System: You are in the Driver Seat
Simone Sommer, MD, MPH – Chordoma Foundation

Funding the Cure: What it Takes to Advance the Research
Laura Gemme – Chordoma Foundation

Taking Charge of Your Healthcare Decisions
John Therien, JD – Smith Anderson Law Firm

Chris Austin, MD - NIH Chemical Genomics Center [Genetics & Drug Development]
Carolyn Compton, MD, PhD - NIH OBBR [Biobanking]
Brian Harfe, PhD - University of Florida [Developmental Biology]
Paul Gardner, MD - University of Pittsburgh [Neurosurgery]
Norbert Liebsch, MD - Massachusetts General Hospital [Radiation Oncology]
Deric Park, MD - University of Pittsburgh [Medical Oncology]
Dilys Parry, PhD - National Cancer Institute [Genetics, Familial Chordoma Study]
Vijaya Ramesh, PhD - Massachusetts General Hospital [Molecular Neurogenetics]
Chandranath Sen, MD - St. Lukes Roosevelt Hospital [Neurosurgery]
Jean-Paul Wolinsky, MD - Johns Hopkins University [Neurosurgery and Spine Surgery]

The Parent's Ultimate Challenge - When Kids/Teens Have Chordoma
Julie Ries, Ph.D, Pediatric Clinical Psychologist at Lifebridge Health’s Brain and Spine Institute

Navigating the Insurance Maze in the US - Where do I begin?
Jennifer Libster, J.D., Georgetown University Health Policy Institute

Advice and Care for Caregivers
Brigid Guttmacher, M.A., L.P.C

What are my rights? - Understanding laws that protect the patient and caregiver
Kerry A. Shad, J.D., Partner, Smith, Anderson, Blount, Dorsett, Mitchell & Jernigan, L.L.P.

Alternative Coping:  Negotiating the Biological and Psychological Dimensions of Pain
Melva Green, M.D., MBA, MPH, Johns Hopkins Department of Psychiatry and Behavioral Sciences

Navigating the Healthcare System
Delia Chiaramonte, MD, President, Insight Medical Consultants

Fran Hornicek, MD, PhD - Massachusetts General Hospital, Orthopaedic Surgery
Michael Kelley, MD - Duke University, Hematology and Oncology
Norbert Liebsch, MD, PhD - Massachusetts General Hospital, Radiation Oncology
Frank Lieberman, MD - University of Pittsburgh, Neuro-Oncology
Lilia Loredo, MD - Loma Linda Medical Center, Radiation Oncology
Deric Park, MD - University of Pittsburgh, Neurology & Neuro-Oncology
Dilys Parry, PhD - National Cancer Institute, Cancer Epidemiology and Genetics
Jean Paul Wolinsky, MD - Johns Hopkins University, Neurosurgery

We thank these generous and committed individuals for making the CCC a great success

» Carolyn Rubenstein, president of Carolyn’s Compassionate Children designed, coordinated, and funded the very special and impactful Chordoma Youth Conference for young people affected by chordoma

» Dr. Bill Dorland, professor of physics at the University of Maryland, generously contributed significant funding from the University of Maryland which made the CCC possible and kept registration fees low

» Sharon Berlan, a former department store executive, reached out to her contacts in the retail sector and secured hundreds of fabulous gifts for participants of the community conference and research workshop.