National Foundation for Ectodermal Dysplasias
Family To Family Network
Liaisons in our growing Family to Family Network 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.
Liaisons
-
Rachel Buerman
Brooklyn Park, Minnesota
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."
-
Julie Claeys
Coopersville, Michigan
Serves Families in Illinois, Indiana, Kentucky, Michigan, Minnesota, and Ohio
Julie lives near Grand Rapids, Michigan with her husband, Craig, son Carver, and 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 ectodermal dysplasias for the past 16 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.
-
Diane De-Rosa Reynolds
White House, Tennessee
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.”
-
Susan Hamm
Spring, Texas
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. "
-
Jennifer Hagerty
Modesto, California
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.
-
DeAnn Huxman
Moundridge, Kansas
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.
-
Lindsey James
Osage, Iowa
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!”
-
Melva Jeter
Firestone, Colorado
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.”
-
Janet Johnson
Salt Lake City, Utah
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.
-
Jack Kriz
Newberg, Oregon
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.
-
Kristin Matus Kelso
Burke, Virginia
Serves Families in Delaware, Maryland, North Carolina, South Carolina, Virginia, West Virginia and Washington D.C.
Kristin lives in Burke, 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.
-
Heather McKelvie
Prospect, Connecticut
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.”
-
Dee Dee Olsen
Port Washington, New York
Serves Families in New Jersey, New York and Pennsylvania
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.”
-
Gina Quintanar
Burbank, California
Serves Families in Southern California and Hawaii
Gina Quintanar lives in Burbank, California, and is thrilled beyond belief to be the Southern California Liaison. Gina is married to her best friend, Luis. Together, they are raising two wonderful teenagers. Tessie loves drama and dancing. Tessie's brother, Alex, is affected by hypohydrotic ectodermal dysplasia. What Gina loves about her family is although Alex has HED and other medical issues, they have never stopped him from doing what he wants to do. He is a straight A student and loves school. Alex loves to play football with his friends on cold days and he is a pretty good trombone player if he does say so himself! When Gina and her family came to the first Family Conference, she knew right away that she had found a place that her family could be loved and accepted for the wonderful people they are. As the Southern California Liaison, Gina looks forward to talking and sharing her story with families but most importantly, letting them know that someone is here to support them! -
Jill Radley
Thatcher, Arizona
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. “
-
Lauren Tomberlin
Quincy, Florida
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.
-
Russell Wilson
Olive Branch, Mississippi
Serves Families in Arkansas, Louisiana, and Mississippi
Russ lives near Memphis, Tennessee 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.”
