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.
Therefore, I feel it is the responsibility of all within our community to support each other by sharing hard-won information and life experiences.
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 lea@nfed.org or call her at 618-566-6871. You can also learn more on our website about volunteering.
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Share Your Story
[…] Off the Radar! […]
[…] Off the Radar! […]
(To Marc Steingesser)
Dear Marc,
I was saddened by the death of your father this past December. I have fond memories of him talking enthusiastically about all things related to outer space, usually while I couldn’t reply because he was working on my teeth. He was my first cousin (My mother, Lillian Kamlet was your grand mother, Helen’s twin) and I held him in high esteem for all his accomplishments, and always enjoyed his company, with his dry sense of humor and his occasional wry smile. I would really appreciate it if you could tell me the reason for his passing. You can check me out (to make sure I’m not some devious, 3rd world phisherman) at facebook (Under Jamie Kamlet) if you want to make I am who I say I am. My phone number (if you want to send me a text) is 845 494-6077, my email is gemsk50@gmail.com. I live in Mountainville, NY. Your second cousin, Jamie Kamlet
P.S.
To Marc Steingesser:
I mean this past September, not December.
Jamie Kamlet