Community Conferences
Chordoma Community Conferences brings together patients, families, researchers and physicians to share progress, exchange ideas and build a network of support for those affected by chordoma, as well as those working to find a cure. The major goals of the conferences are to provide patients and caregivers information to be empowered self-advocates and to understand their very important role in finding more effective treatments and ultimately a cure for this neglected disease.
2013
Speaker Presentations |
|
| Chordoma 101 Chandranath Sen, MD – Neurosurgeon, NYU |
Nutrition and Cancer Julia Hincman-Francavilla, MS, RD, CSO, LDN – Clinical Nutrition Specialist, MGH Cancer Center |
| Surviving and Thriving – Long Term Survivors Panel Irith Abada, Adriane Flanagan, John Nelson, Michael Torrey – Chordoma Patients |
Mindfulness Phyllis K. Hicks, DMin, NCLPC – Senior Insight Dialogue Teacher, Metta Janet Surrey, PhD – Insight Dialogue Teacher, Metta |
| Highlights from the International Chordoma Research Workshop Chordoma Foundation Research Plan Josh Sommer – Chordoma Foundation |
Pallative Care Anthony Galanos, MA, MD – Associate Professor of Medicine, Duke University Medical Center |
| A Call to Action! Deirdre Callahan – Chordoma Foundation |
You’re In the Driver’s Seat – Patient Navigation Al Ferreira, RN – Massachusetts General Hospital, Harris Center for Chordoma Care |
| Parents and Chordoma Paula K. Rauch, MD – Director, Marjorie E. Korff PACT Program |
Scanxiety Kelly M. Trevino, PhD – Clinical Psychologist and Research Fellow, Dana-Farber Cancer Institute |
| Navigating Clinical Trials Mrinal Gounder, MD – Medical Oncologist, Memorial Sloan Kettering Cancer Center |
|
Ask the Experts Panel |
|
| Gregory Cote, MD, PhD - Massachusetts General Hospital [Medical Oncology] | Francis Hornicek, MD, PhD - Massachusetts General Hospital [Orthopaedic Oncology] |
| Adrienne Flanagan, MD, PhD - Univeristy College London [Pathology, Molecular Biology] | Norbert Liebsch, MD, PhD – Massachusetts General Hospital [Radiation Oncology] |
| Gary Gallia, MD, PhD - Johns Hopkins University [Neurosurgery] | Robert Malyapa, MD, PhD - University of Florida Proton Therapy Institute [Radiation Oncology] |
| Paul Gardner, MD - University of Pittsburgh [Neurosurgery] | Joseph Schwab, MD, MS – Massachusetts General Hospital [Orthopaedic Oncology] |
Coordinating Committee |
|
|
*Co-Chairs |
Volunteers |
|
|
|
2011
Speaker Presentations |
|
| Surviving and Thriving Anne Willis – National Coalition for Cancer Survivorship |
Chordoma 101 Ed Les, MD, DVM – Chordoma Foundation board member |
| Care for Caregivers Amy Sales, MSW, LCSW-C |
For the Bereaved – Living While Grieving Drucilla Brethwaite, MSW, LCSW, OSW-C – Life With Cancer |
| Oncology Clinical Drug Development Sandra Silberman, MD, PhD – Quintiles Innovation |
You’re in the Driver’s Seat – Navigating the Medical System Laurel Gregory – Patient Advocate Foundation |
| Community Action Showcase Deirdre Callahan – Chordoma Foundation |
Familial Chordoma Study Dilys Pary, PhD – National Cancer Institute |
| Latest Research from University College London Adrienne Flanagan, MD, PhD – University College London |
Latest Research from Johns Hopkins University Ahmed Mohyeldin, MD, PhD – Johns Hopkins University |
| Forward Together: Patient-centered Outcomes in Research, Education & Advocacy Supplementary Materials Erin Dunbar, MD – University of Florida |
Being Well With Disease Micheline Toussaint, MSW, LCSW, RYT – Life with Cancer Family Center |
Ask the Experts Panel |
|
| Erin Dunbar, MD - University of Florida [Medical Oncology] | Tom DeLaney, MD - Massachusetts General Hospital [Radiation Oncology] |
| Adrienne Flanagan, MD, PhD - Univeristy College London [Pathology, Molecular Biology] | Paul Gardner, MD - University of Pittsburgh [Neurosurgery] |
| Dilys Parry, PhD - National Cancer Institute [Genetics, Familial Chordoma Study] | Scott Schuetze, MD, PhD - University of Michigan [Medical Oncology] |
Coordinating Committee |
|
|
|
Volunteers |
|
|
|
2009
Speaker Presentations |
|
| 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 |
Ask the Experts Panel |
|
| 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] |
Coordinating Committee |
|
|
|
Volunteers |
|
|
|
2008
Speaker Presentations |
|
| 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 |
Ask the Experts Panel |
|
| 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] |
| Dilys Parry, PhD - National Cancer Institute [Genetics, Familial Chordoma Study] | Lilia Loredo, MD - Loma Linda Medical Center [Radiation Oncology] |
| Deric Park, MD - University of Pittsburgh [Neurology & Neuro-Oncology] | Jean Paul Wolinsky, MD - Johns Hopkins University [Neurosurgery] |
Coordinating Committee |
|
|
|
Volunteers |
|
|
|