Chordoma Foundation


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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.

Regional Community Conferences – 2015


In 2015 the Chordoma Foundation will partner with leading medical centers to host a series of Regional Community Conferences to educate, support and connect chordoma patients and family members.These one-day regional events will complement the larger International Chordoma Community Conferences, which the Foundation will continue to host every 2-3 years, with the next one planned for 2016.

REGIONAL  COMMUNITY CONFERENCES

March 14, 2015 - University of Southern California
Los Angeles, California

June 15, 2015 – Memorial Sloan Kettering Cancer Center
New York City, New York

Fall 2015 – Date and Location TBA

Chordoma Regional Conferences Sample Agenda

International Community Conference- 2013


 CCC 2013 Group Photo

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
 2013 Memorial Service

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


  • Sharon Berlan
  • Marley Jay
  • Sue Johnson
  • Norma Jones
  • Heather Lee*
  • Lynette Nelson
  • Adriane Rothstein*
  • Karen Sain
  • Misty Sack

*Co-Chairs

Volunteers


  • Nadine Cordova
  • Mary Grover
  • Tracy Jaroszewicz
  • Bobbi Antonazzi Jensen
  • John Nelson
  • Jason Straus
  • Steve Straus
  • Rob Strauss
  • Elise Stoll
  • Katrina Stoll
  • David Szabo
  • Michael Torrey
  • Lisa Vanelli

International Community Conference – 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


  • Sharon Berlan
  • Alicia Jeffreys
  • Norma Jones
  • Ian Laird
  • Debbie MacDonald
  • Colleen Riccomini
  • Adriane Rothstein
  • Laura (Gemme) Triplett
  • Michael Torrey
  • Bill Victor
  • Candice Walsh

Volunteers


  • Lynette Johnson
  • Sara Husein
  • Marley Jay
  • Diane Evia-Lanevi
  • Ingemar Lanevi
  • Samantha Lanevi
  • Kathleen Milczarski
  • Karen Sain
  • Erin Smith
  • Casey Smith
  • Carolyn Steinle
  • Robinson Strauss
  • Jason Straus
  • Jack Victor
  • Candice Walsh

International Community Conference – 2009


Chordoma Community Conference 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


  • Sharon Berlan
  • Bill Dorland
  • Laura Gemme
  • Norma Jones
  • Heather Lee
  • Debbie MacDonald
  • Lynette Nelson
  • Candice Owen
  • Shawn Owenberg
  • Adriane Rothstein
  • Karen Sain
  • Simone Sommer
  • Michael Torrey

Volunteers


  • Abby Becherer
  • Diane Evia-Lanevi
  • Nina Halper
  • Keith Johnson
  • Sammy Lanevi
  • John Nelson
  • Nora Onufer
  • Kerry Shad
  • Sue Shimer
  • David Small
  • Elise Stoll
  • Steve Straus
  • Bryan Sykora
  • Joe Sykora
  • Candice Owen Walsh
  • Sydney Warren

International Community Conference – 2008


2008 CCC

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


  • Sharon Berlan
  • Margie Carberry
  • Bill Dorland
  • Melissa Dorr
  • Norma Jones
  • Heather Lee (chair)
  • Ed Les
  • Bruce Nelson
  • Lynette Nelson
  • Marti Neugarten
  • Candice Owen
  • Adriane Rothstein
  • Carolyn Rubenstein (youth chair)
  • Josh Sommer
  • Simone Sommer
  • Michael Torrey

Volunteers


  • Ben Abram
  • Whitney Ahneman
  • Abby Becherer
  • Stephen Dean
  • Amber Johnson
  • Keith Johnson
  • Kara Leibel
  • Ben Kanoy
  • Marysia Marts
  • Alex Oden
  • Candice Owen
  • Ronda Peoples
  • Devon Schwartz
  • Caleb Scoville
  • Erin Seo
  • Elise Stoll