M.S. Public Administration, Heinz School, Carnegie-Mellon University
Ed Steger is a head and neck cancer survivor. He was diagnosed with squamous cell carcinoma at the base of his tongue and oral cavity in 2005. After hitting some rough patches in 2006 and 2007, he has had no evidence of disease since October 2007. Ed’s dysphagia is severe and began in mid 2006 after a 12 hour salvage surgery which required removal of his left lower jaw bone, part of his tongue, a large section of tissue, muscle, and nerves from the upper back part of his esophagus, part of his epiglottis, and a quarter-sized hole in his soft palate. In his quest to regain a social eating style, he contacted and was seen by Dr. Belafsky. This clinic visit was the start of a new friendship which included an introduction to Sonia Blue, the former NFOSD President. Sonia and Ed began working together. To make a long story short, Sonia surveyed the NFOSD board of directors, gained a consensus, and then asked Ed if he would take over as president of the Foundation. Ed viewed this as a gift and accepted the presidency effective September 1, 2012.
Ed remains an active volunteer patient research advocate at the University of Texas MD Anderson Cancer Center where he has been treated since his original diagnosis. Ed’s career before cancer was as a management consultant and program manager with a bent toward information technology projects. He has run programs valued at up to one billion dollars and has experience in the healthcare, banking, energy, hospitality, retail, construction, real estate, and film industries.
Ed Steger holds a Master degree in Public Administration from the Heinz School at Carnegie Mellon University. His undergraduate work is in math and computer science at the University of Pittsburgh. He also writes a blog about his cancer journey at www.hncancer.blogspot.com.
Ed’s decade plus experience with dysphagia, his prior volunteer efforts, and his business background make him a good match for evolving the NFOSD. His personal mission is to help patients and caregivers navigate a medical condition which is often misunderstood and under diagnosed.
Select publications in which Ed Steger wrote or participated:
2021 Virtual Head and Neck Cancer Survivorship Symposium – Dysphagia and Swallowing Challenges https://www.youtube.com/watch?v=EL7o3st6HXA
Diseases of the Esophagus
Title: Economic and survival burden of dysphagia among inpatients in the United States.
PubMed abstract: https://www.ncbi.nlm.nih.gov/pubmed/29155982
Date: December 5, 2017
Title: Dysphagia: The Invisible Disorder
Date: June 2, 2017
Dysphagia: it’s like being waterboarded 24 hours a day
March 15, 2016
US News and World Report
A Disorder That’s Hard to Swallow
Date: May 28, 2015
Making the Most Out of Your Patient Portal
Date: March 7, 2014
Support for People with Oral Head and Neck Cancer (SPOHNC)
TIME FOR SHARING… Cancer Changes Everything (pages 4 and 5)
Texas doctors lead open-notes movement
January 16, 2012
Living with Head and Neck cancer (110 entries)
May 2007 – August 2012
MD Anderson Cancerwise (Patient blog)
Best of Cancerwise 2012: Surviving Cancer
Adjusting to the new normal after cancer (Story 2)
December 19, 2012
Dysphagia: What’s food got to do with it?
December 6, 2012
It’s Holiday Time: The Gift of Life
December 11, 2012
Adjusting to the new normal
August 20, 2012
A Second Chance at Life
April 24, 2012
A Second Chance at Life Part II
April 25, 2012