Julie is the liaison for the Midwest Region. She lives near Grand Rapids, Michigan with her husband, Craig, 12-year-old Carver, and 2-year-old daughter, Maria. Carver was diagnosed with hypohydrotic ectodermal dysplasia at four months old. Julie says, “We have found no better resource than the NFED to support our needs. I can send you much information I have acquired while dealing with issues of ED for the past 12 years. Hopefully we can plan regional meetings for us all to gather and discuss issues and offer support. The children can meet each other too! I know it always means a lot to our son to be with others whom share the same differences. We all started in the same spot you are in now and remember it well. I look forward to hearing from you and welcome your e-mail. We are Family.
jclaeys@charter.net

DeAnn Huxman
Moundridge, Kansas

DeAnn lives in Moundridge, Kansas with her husband Chris, and sons Ryan (age 7), Tyler (age 5), and Andrew (age 1). Tyler was diagnosed at birth as being affected by Ectrodactyly-Ectodermal Dysplasia-Clefting syndrome or EEC syndrome. DeAnn believes that asking questions and being able to talk to someone who has “been there” is one of the most valuable things you can do to acquire a support network. With the NFED, she says “we all end up being a part of the same “family”. DeAnn wants to help make your experience with the NFED a great one.
cdrthux@mtelco.net

Janet Johnson
Salt Lake City, UT 84106

Janet lives in Salt Lake City, Utah with her husband, Russell, and their two sons, Taylor and Alex. Alex was almost one year old when he was officially diagnosed with hypohydrotic ectodermal dysplasia. Janet says, “The NFED can empower doctors who have never cared for a child with ED. It also helped me educate and inform our school and teachers about Alex. You also get a support group that can be of great help and comfort to you.” She looks forward to hearing from families in her region. Contact Janet.
tayalnes@hotmail.com

Jack Kriz
Oregon

Jack is the family liaison for the Pacific Northwest, where he lives with his wife, Paula and daughter, Delany. He is affected by Ectrodactyly-Ecotdermal Dysplasia-Clefting (EEC) syndrome. Jack believes “the most important thing the NFED provides is person to person support. Beyond the technical medical jargon what most people crave is seeing, talking to and becoming friends with other affected people and their families.” Jack encourages you to contact him as a resource and ask him any question, even personal ones about his own ED experiences. If you just need to talk to someone “who’s been there” and is living there still.
jack@mdgpc.com

Dee Dee Olsen
Port Washington, New York

Dee Dee Olsen lives on Long Island, New York. She and her husband, Alan, have three children. Their middle child, Jade age 6, was born with Focal Dermal Hyperplasia (also called Goltz Syndrome). Prior to her birth, they had never heard of Goltz syndrome or Ectodermal Displaysia and during the pregnancy were completely unaware of her condition. Dee Dee says, “As a family liaison I would love to be of assistance should you need it. I’d love to try and pay forward just a bit of the kind, helpful, and knowledgeable assistance given to me by the NFED.”
dgocsw@verizon.net

Beth Pond
Hubbardston, Massachusetts

Beth lives in Hubbardston, Massachusetts with her husband, Michael, and three sons. Dylan is 13, Nolan is 12 and Philip is 11. The younger two and Beth’s brother are affected by hypohydrotic ectodermal dysplasia. Beth believes that knowledge is power and you get that when you join the NFED. She is willing to communicate through email or talk on the phone and can share regional special needs resources. She’s interested in planning regional gatherings so the children and families can meet each other. Beth says, “The NFED can’t be everywhere but the regional liaisons can. I am excited to be the bridge between Mascoutah, Illinois and the New England States. Please contact me if you would like to talk or email me with any questions you have. I look forward to hearing from you.”
pondboys@charter.net

Russell Wilson
Olive Branch, Mississippi

Russ lives near Memphis, Tennessee with his wife Valerie, and daughters Whitney (age 6), and MaKaylee (6 months). He is affected by hypohydrotic ectodermal dysplasia and his two daughters are carriers. Russ' goal in being a family liaison is to "provide a compassionate experience for all who come into contact with the Foundation.”
Wilson_russ@comcast.net