We are beginning to plan the next 2013 Chordoma Community Conference (CCC). It would be wonderful to hear your thoughts to help us formulate the most powerful and productive conference yet! What would you like to see addressed at the conference? Whether you are newly diagnosed, 2 years out or 10 years out, or a caretaker, family member or friend, we would like to hear from you. As members of the steering committee, we hope to host a conference that responds to the needs of our community.
Our first conference in 2008 helped us connect to people with whom we ‘met’ online. We met face to face as a group to find support and strength in each other’s journey. Moreover, we wanted to support the newly founded Chordoma Foundation and its endeavors to raise money to find more effective treatments and ultimately a cure for this cancer. Now five years after that first conference, supporting the Foundation takes many forms, e.g., assisting in fundraising to support research, donating tissue, attending the Chordoma Community Conference if possible, and providing input to a survey about what you would like to see at the Conference. Every year the community conference becomes richer and more relevant because of your feedback and input. Please click on the following link to be taken to the survey
All responses are anonymous unless you choose to provide your contact information. If you don’t see a question on the survey that addresses your needs, let us know. We cannot guarantee that each suggestion can be addressed, but hopefully we will come up with some common topics to help us shape the theme for the conference. For all additional comments, feel free to write to Adriane Rothstein off line: email@example.com or post a comment here.
If possible, we would love to have your comments by Sunday, August 26th as we will have our first planning session on Monday the 27th. We will hold the link open, though, so you will have a chance to give us feedback and we will check your responses over the course of the next several weeks.
Your CCC 2013 Steering Committee
Adriane Rothstein Karen Sain
Norma Jones Lynette Nelson
Sharon Berlan Marley Jay
Misty Sack Sue Johnson
Heather Lee (CF)