Esophageal Cancer Support, Inc.

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Beating Esophageal Cancer to Become an Advocate

Esophageal Cancer Support, Inc. (ECSI) has evolved over the past decade largely from the experiences and efforts of Mary Helen Duggar, Jack Brady, and Joe Lerner. Mary Helen underwent an esophagectomy in February 2007 and did not know anyone who had survived esophageal cancer (EC). As she began her recovery, which included learning to eat all over again, Mary Helen wanted to find others who had been through a similar experience. Gradually, she came in contact with individuals who had survived EC surgery and had questions regarding post-surgery care and dietary practices. She started meeting with other survivors over a cup of coffee to discuss what was working, what didn’t work, and what problems they continued to have. Soon the EC group started formally meeting four times a year, usually at a restaurant, diner, sports bar, cafeteria, or in a room provided by Mayo Clinic.

As the quarterly meetings were formalized, surgeons, gastroenterologists, dietitians, and other medical specialists were invited to speak to the group. Attendance increased, and soon there were 20-30 EC survivors attending the meetings. The high point of each meeting continues to be the one-on-one sharing of information and concerns among attendees.

At the January 2012 quarterly meeting, the EC group decided to formalize the organization into a non-profit 501(c)(3) corporation in order to expand its assistance and increase public awareness activities. The group also decided to set up a booth at the two-day registration event for the annual DONNA Foundation run for breast cancer support in Jacksonville. The booth was a great success for increasing EC awareness. Over seventeen EC survivors and caregivers manned the booth and talked to many individuals who were concerned with acid reflux, Barrett’s Esophagus, and esophageal problems.

Today, Mary Helen works to create awareness about esophageal cancer and the closely related condition of Barrett’s Esophagus - a pre-cancerous change in the cells lining the lower esophagus. She leads ECSI meetings and activities and continues to talk with and visit people affected by esophageal cancer.

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