Liaisons in our growing Family Liaison Program are eager to share with you their experiences with ectodermal dysplasias—and to listen to your experiences too! All of the liaisons are either an adult with ectodermal dysplasia or the parent of a child with ectodermal dysplasia. They are also familiar with NFED services and resources and can share a wealth of information with you. If you do not have a specific need to contact one of our Liaisons, then contact them just to say hello and to meet someone else effected by ectodermal dysplasia in your area.
Serves Families in Minnesota, North Dakota and Wisconsin
Rachel, her husband Chris, and daughters Kaylee and Jordan, live in Brooklyn Park, Minnesota. She has a PharmD degree from the University of Minnesota and currently is a pharmacy manager for the Walgreen Company. Jordan is affected by focal dermal hypoplasia or Goltz syndrome. When Jordan was born, Rachel says, "We were shocked, overwhelmed, and scared. The NFED has helped us in many ways to sort through the complexities and challenges of raising a child with an ectodermal dysplasia. We have heard other people’s stories and shared ours. The information we’ve learned is priceless. The friendships we’ve made are invaluable. I am honored to be a NFED Family to Family Network Liaison and I look forward to hearing from you."
Serves Families in Alabama and Tennessee
Diane currently travels all over southeast Asia recruiting international students for USA universities. Shewas diagnosed with ectodermal dysplasia at a very young age and her parents went immediately to the NFED for guidance and support. Diane says that “having Ectodermal Dysplasia has been a blessing in disguise, I have learned so much about myself and the friends I have around me. I have gained confidence through numerous surgeries and am honored to be mentoring young people and families like myself.”
Serves Families in Texas
Susan says, "My husband Paul, our son Zachary, and I live in Spring, Texas, a suburb of Houston. Zachary, is affected by ectrodactyly-ectodermal dysplasia-clefting syndrome or EEC syndrome. The National Foundation for Ectodermal Dysplasias has been an important part of our lives since 2006. I have a degree in marketing education and taught in the Florida school system for 10 years. I am now the President of Oz Gas Corporation. I enjoy volunteering at my son’s school and am currently serving as the secretary for the PTO. I have also been a room mother each year since 2006. Zachary, myself and my husband host the Annual Zach Hamm’s Don’t Sweat it Golf Classic to benefit the NFED. My husband, Paul serves on the NFED Board of Directors. I am honored to serve as a Family to Family liaison for the NFED. "
Serves Families in Pennsylvania
As a carrier, daughter, mother, and aunt of HED-affected boys, nothing brings me more joy than to partner with, and share information with others affected in some way by the ectodermal dysplasias. The NFED community has been an invaluable resource to me and my family, and I have built life-long, and lasting friendships with its members. Most recently, my nephew was the third baby to participate in the Edimer Pharmaceuticals newborn HED study, and I couldn't be more excited about the new hope and awareness on the horizon for affected families. As a Liaison, I hope to provide needed information and support to individuals, and families in my region, whenever needed. I feel honored to work with the NFED and all of its wonderful families in this new capacity!
Serves families in Illinois and Missouri
Virginia lives in St. Louis, Missouri with her husband Brian, son Zane, and daughter Selah, where she homeschools, is active in ministry, and writes at thatbaldchick.com. Virginia and Zane are affected ankyloblepharon-ectodermal defects-cleft lip and palate (AEC)syndrome. Virginia grew up with the NFED and was taught, by her Mom, at an early age that people ridicule that which they do not understand; make them understand, and they will not ridicule. That life lesson empowered her to educate others about ectodermal dysplasias and she relishes opportunities to raise awareness. Virginia believes that you are only as limited as you allow yourself to be, and being affected by ectodermal dysplasias doesn't have to be a limit. Whether by phone, email, Facebook, or in person, Virginia would love to connect with you.
Serves Families in Kansas and Oklahoma
DeAnn lives in Moundridge, Kansas with her husband Chris, and sons Ryan, Tyler, Andrew and Grant. Tyler and Grant are 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.
Serves Families in Iowa, Nebraska and South Dakota
Lindsey lives in Osage, Iowa with her son, Keegan. Keegan was diagnosed with hypohydrotic ectodermal dysplasia at 18-months old. Lindsey says, “Prior to Keegan’s diagnosis, I had never heard of ectodermal dysplasia and had no idea that I was a carrier. The NFED is such a valuable resource for information and support and I’m very excited to be a part of that! Understanding and dealing with ectodermal dysplasia can be overwhelming but you are not alone. Please feel free to ask me anything or contact me if you just need someone to talk to… I’m a great listener and willing to share from my own experiences. I look forward to hearing from you. Welcome to the NFED family!”
Serves Families in Colorado and New Mexico
Melva lives in Firestone, Colorado with her husband, Allen, and two sons, Patrick and Christien. Christien and Melva’s two brothers as well as eight cousins are affected by XLHED. Knowing the experimentation performed on older family members by doctors who simply had no idea what condition they were dealing with, based on the symptoms these syndromes produce, Melva has a drive to see healthcare providers educated to the fullest extent. This will reduce the time where a family is dealing with a “mystery diagnosis” and can begin making lifestyle and treatment choices to improve the quality of life for those affected. Melva says “I’m honored to be selected by the NFED to be a regional liaison. My first responsibility is to the families in my areas of Colorado, Wyoming and Montana, and helping them get the most out of the programs and support provided by the NFED. Please contact me if you would like to talk or email me with any questions you have. I look forward to hearing from you.”
Serves Families in Nevada and Utah
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 ectodermal dysplasias. 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.
Serves Families in Alaska, Idaho, Montana, Oregon, Washington and Wyoming
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 ectodermal dysplasias experiences. If you just need to talk to someone “who’s been there” and is living there still.
Serves Families in North Carolina, South Carolina, and Virginia
Kristin lives in Chesapeake, VA, with her husband, Mark, and two daughters, Morgan and Allyson "Ally". Ally is affected with ectrodactyly-ectodermal dysplasia-clefting syndrome (EEC). Growing up as a military "brat" and now being a military spouse, Kristin has adapted to many new situations in her lifetime. This ability to "deal with change" has probably helped her cope with the shock of having a child born with this condition and maintain a positive outlook in the face of adveristy. In addition to having EEC Syndrome, Ally also had feeding issues and was fed via a g-tube for several years, began losing her vision at age 3, and is now blind. While she's "not a doctor", Kristin feels she has learned a lot about dealing with multiple medical issues and communitcating with members of the healthcare community and school systems. She has been involved with the NFED since Ally's birth and feels she can offer a lot of wisdom, support, and guidance as she shares her daughter's journey with others. She looks forward to meeting the families in her region.
Serves Families in Connecticut, Maine, Massachusetts, New Hampshire, Rhode Island and Vermont
Heather is the liaison for the New England Region. She’s affected by ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome. During her childhood, she had more than 20 surgeries and countless doctor and dentist appointments, not to mention hospital stays and days missed from school. Heather says, “I know how it feels to be the kid who has to take a break on hot days to go sit in the shade, or to hear other kids at school asking questions like ‘What’s wrong with you?’ I am someone who has been there and can relate to much of what you’re going through. I stand here as evidence that everything will turn out okay in the end! As your liaison, I am excited to work with you to plan regional gatherings and local events where we can meet up and share our experiences in person.”
Serves Families in Northern California
Jennifer lives in Modesto, California with her husband, Justin, and their two children, Joshua and Jaxon. She is currently a stay at home mom and excited to be the liaison for northern California. Joshua is affected by Rapp-Hodgkin syndrome. However, he remains a well rounded, active, little boy who lives life to the fullest. She hopes to provide a positive support system to the families in her region weather it is in person, via email, or a phone call. Please contact her if there is anything with which she can help you.
Serves Families in New Jersey and New York
Dee Dee Olsen lives on Long Island, New York. She and her husband, Alan, have three children. Their middle child, Jade, was born with focal dermal hyperplasia (also called Goltz syndrome). Prior to her birth, they had never heard of Goltz syndrome or ectodermal dysplasia 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.”
Serves Families in Southern California and Hawaii
Serves Families in Arizona
Jill lives in Thatcher, Arizona with her husband and their son, Caleb. Jill and their son is affected by hypohidrotic ectodermal dysplasia. Jill says, “As a liaison, I am here to help with a more regional connection to the foundation. I am willing to share my story through emails, phone calls, and letters and provide a listening ear to your story and needs. We may have lots of similar struggles with insurance issues, climate, cooling, and finding care in areas of the country that has facilities very far apart from where we may live. My contact information is below. Please don’t hesitate to reach me. If I don’t have the answer, I will help try to find one. I am looking forward to getting to know you. “
Serves families in Delaware, Maryland, Washington DC and West Virginia
Marc lives in Ellicott City, Maryland with his wife, Mary, and daughters, Rachel and Sarah. Marc is affected by ectrodactyly ectodermal dysplasia with clefting (EEC) syndrome. Although it wasn't until he was in his 40s, Marc was profoundly and positively effected to learn that there were others "just like" him. 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.
Serves Families in Florida and Georgia
Lauren and her husband, Carl, and their children Langley and Logan live in Quincy, Florida. Lauren and Langley are both affected by hypohidrotic ectodermal dysplasia. Lauren says, “As a family liaison I am available for a multitude of things, from helping educate doctors and other professionals to helping you gain access to resources to just having a shoulder to lean or an ear to listen. I look forward to hearing from you.” Lauren is excited to be the NFED family liaison for your region.
Serves Families in Arkansas, Louisiana and Mississippi
I am 31 years old. I have been married to Marshall Walker for 8 years and we have four beautiful children. I am from Bay City, Texas and now live in Iowa, Louisiana. I went to school in St. Charles MO, at Lindenwood University. I am a proud stay at home mom. I am very happy with my current career choice. God has given us these beautiful children and I take advantage of every moment I am blessed with them. I am a very compassionate, patient, kind person and I try to teach my children to be the same. Before I had kids, I enjoyed playing basketball and volleyball and being out in the sunshine with friends and family. I still enjoy those things, they are just a little modified! As a family, we enjoy hunting and riding ATVs, getting out on the lake, swimming, and spending time with friends and family. The NFED has been such a positive important part of our lives and it would be a blessing to be able to give back a part of what the NFED staff and familys have given us!
Serves Families in Indiana, Kentucky, Michigan and Ohio
Russ lives in Sheridan, Indiana with his wife Valerie, and daughters Whitney and MaKaylee. 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.”