Ed Steger

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:

2022 Advanced Biology: Notes on Surviving Head and Neck Cancer: Paving the Road Ahead


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

Cook Medical
Title: Dysphagia: The Invisible Disorder
Link: https://www.cookmedical.com/otolaryngology/dysphagia-the-invisible-disorder/
Date: June 2, 2017

Dysphagia: it’s like being waterboarded 24 hours a day
Link: https://mosaicscience.com/story/dysphagia-swallowing-disorders
March 15, 2016

US News and World Report
A Disorder That’s Hard to Swallow
Link: http://health.usnews.com/health-news/patient-advice/articles/2015/05/28/a-disorder-thats-hard-to-swallow
Date: May 28, 2015

CURE publication
Making the Most Out of Your Patient Portal
Link: http://www.curetoday.com/publications/cure/2014/spring2014/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)
Link: https://www.spohnc.org/Newsletters/November2012.pdf
November 2012

Houston Chronicle
Texas doctors lead open-notes movement
Link: http://www.chron.com/news/houston-texas/article/Texas-doctors-lead-open-notes-movement-2575183.php
January 16, 2012

Personal blog
Living with Head and Neck cancer (110 entries)
Link: http://hncancer.blogspot.com/
May 2007 – August 2012

MD Anderson Cancerwise (Patient blog)
Best of Cancerwise 2012: Surviving Cancer
Adjusting to the new normal after cancer (Story 2)
Link: https://www.mdanderson.org/publications/cancerwise/2012/12/cancer-survivor-cancer-survivorship.html
December 19, 2012

Dysphagia: What’s food got to do with it?
Link: https://www.mdanderson.org/publications/cancerwise/author/Ed%20Steger.html
December 6, 2012

It’s Holiday Time: The Gift of Life
Link: https://www.mdanderson.org/publications/cancerwise/2011/12/its-holiday-time-the-gift-of-life.html
December 11, 2012

Adjusting to the new normal
Link: https://www.mdanderson.org/publications/cancerwise/2012/08/adjusting-to-the-new-normal.html
August 20, 2012

A Second Chance at Life
Link: https://www.mdanderson.org/publications/cancerwise/2012/04/a-second-chance-at-life.html
April 24, 2012

A Second Chance at Life Part II
Link: https://www.mdanderson.org/publications/cancerwise/2012/04/a-second-chance-at-life-part-ii.html
April 25, 2012