ECAA Information

The ECAA Origins

Born from the enormous uncertainties in dealing with EC, about two dozen ACOR EC-Group members began exploring possibilities in side conversations. Our aims were and remain comparatively simple - to help EC patients, survivors and their caregivers deal more effectively with the uncertainties of this disease and its consequences.

By Fall 2001, we had created "The projECt." We wanted to help each other obtain and organize available information so that access and understanding are not limited to a few, fortunate people. This might mean raising funds for research, better means of outreach, and improved access to and delivery of services beyond just a few centers.

In February, 2002 we had a mission statement and began formalizing the organization to accomplish it. We prepared bylaws for a not-for-profit corporation registered in New York State. "The projECt" became the ECAA with a provisional set of officers.

The Esophageal Cancer Awareness Association (ECAA) was formed at its first annual meeting in Philadelphia on July 28, 2002. The major activities in Philadelphia were the election of ECAA Board members, review of the bylaws, and planning the next steps.

EC is a complicated disease and it really complicates people’s lives. Could we help? Could we increase awareness in the medical profession of the survivors out here? What prevention or intervention might help?

Other cancers have benefited greatly via national advocacy and support groups. We wanted an EC support group to truly fill that void, possibly even internationally. Not everyone could join the EC-Group. How could we reach out to those others, the silent 95% or 99% of potential patients and caregivers?

So we are people banded together by bad luck, with the EC-Group as our community of lifesavers and angels. Yet we knew all too well that we could not count on that virtual group to carry the torch forward.

The ECAA Future

We intend to provide various publications, information and analysis of new discoveries on this web site and hope to involve related groups, medical personnel, scientists, and many others who presently are not tied into the EC-Group.

We want to raise money for research into the causes, treatments, and outcome of EC. We also want to continue to support ACOR's efforts.

ECAA will focus on issues affecting patients and caregivers, and work with drug firms, EC research centers and state and federal agencies.

Many of these services will directly depend on financial donations and getting people who are able and willing to help. In June, 2004, we received IRS approval as a tax-exempt organization.  See how you can Help!

Eventually we hope to have a paid staff and Executive Director, but for the time being this is a volunteer group with unpaid officers. We could have as many as a thousand members in a couple years.

ECAA Bylaws

Bylaws of the Esophageal Cancer Awareness Association, Inc. Version 4.1, adopted on February 15, 2003.

ECAA Policies

Our privacy, advertising, and other policies are outlined here.