Mark Steingesser Profile

By Marc Steingesser

I volunteer for the NFED for two reasons:

Those of us affected by ectodermal dysplasia are part of a rare group with unique life challenges that can sometimes place us outside the box and off the radar of the mainstream world.  It can be difficult to find well-informed medical professionals able to provide effective care, or to simply find others that can understand and relate to our uncommon situation and perspective.

Mark Steingesser at Rally for Ally
From L to R: Mac Ferris, Allyson Kelso, Seth Ferris and Marc Steingesser at the 2015 Rally for Ally in Virginia.


Therefore, I feel it is the responsibility of all within our community to support each other by sharing hard-won information and life experiences.

Mark Steingesser at NFC CO II
From L to R: Jack Kriz, Tyler Huxman, Grant Huxman and Marc Steingesser at the NFED Family Conference in Colorado Springs, CO in July 2015

I consider the members and staff of the NFED to be part of my extended family – they’re people I care about, wish happiness for, and want to help when they’re in need.  And of course, all of these sentiments have been expressed in my direction by many within the NFED family.

I am very grateful for my involvement with the NFED.


Editor’s Note:

Marc Steingesser is the Family Liaison serving families in Delaware, Maryland, Washington DC and West Virginia. Affected by ectrodactyly ectodermal dysplasia-clefting (EEC) syndrome, Marc has found the NFED to be an incredible organization and community that’s made up of kind, knowledgeable, and caring people. He looks forward to helping others become enriched through their connection to the NFED.

Would you like to volunteer for the NFED? Email Lea Richardson, NFED manager, community engagement, at or call her at 618-566-6871. You can also learn more on our website about volunteering.

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Volunteering for the NFED is My Opportunity to Give Back

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2 comments on “Off the Radar!”

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    EEC Chick at Work | National Foundation for Ectodermal Dysplasias on September 23, 2015

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    Pen Pals Across the Pond! | National Foundation for Ectodermal Dysplasias on April 20, 2016

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