Family Liaisons

Lives in St. Peters, Missouri

Virginia Higgins is a writer, pastor, ministry coach, and homeschooling mom who is affected by AEC syndrome. As a long-time member of the NFED, she loves encouraging families as they navigate the challenges of ectodermal dysplasias, offering a listening ear, practical support, and the reminder that no one has to walk this journey alone.

Lives in Madisonville, Louisiana

Ann is a new Family Liaison, but has been a member of the NFED family since 1999 when her daughter, Greta was born with EEC. Greta has endured many surgeries and setbacks over the years, but has emerged as an advocate herself for children born with genetic anomalies. Ann looks forward to connecting with the families of Louisiana and wants to make sure that they have all of the love and support they need to navigate this journey.

Lives in Newberg, Oregon

Born with EEC in 1952. Husband of the fabulous Paula, father of the dear Delany, and a new grandfather as of July 2026!. Jack connected with the NFED in 2002, serves as a Family Liaison and as a member of the NFED Board of Directors. A retired commercial architect now designing homes for Habitat for Humanity. Lives on a small acreage with a dog, a vegetable garden, and a solar powered home. Enjoys cycling the coasts, the mountains and the plains of several states including a couple as fundraisers for the NFED. Jack also likes all things chocolate!

Lives in Burke, Virginia

Kristin has been a Family Liaison since 2009 and is the mother of an adult daughter with EEC Syndrome who has undergone numerous challenges in her life — mostly related to her eyes and vision loss. Kristin enjoys connecting new families with NFED services and support, ensuring no one faces a diagnosis alone. She firmly believes that a personal connection to someone who truly understands your journey is the most powerful tool a parent can have, and she brings that conviction to every family she serves.

Lives in Aurora, Colorado

Lives in Hesston, Kansas

Lives in Minneapolis, Minnesota

Lives in Seneca, Illinois

Lives in Boise, Idaho

Lives in Salt Lake City, Utah

Janet is the mom to Alex, an adult affected by HED or Hypohidrotic Ectodermal Dysplasia. She has been a liaison since the beginning of the program. Both Janet and her son, Alex, like to help others and try to answer questions related to living with ectodermal dysplasia.

Lives in West Chicago, Illinois

Beth Orchard is a writer, coach, and spiritual director who lives in the west suburbs of Chicago. She and her son have XLHED and her daughter is unaffected. Ever since her first conference in Virginia, she has become an advocate for her family and others with Ectodermal Dysplasias and loves to support families who are experiencing the mental health challenges of medically complex kids as well as neurodivergent parents and their families. She is ready to help anyone by listening, offering support from her experience and sharing the journey together knowing we are stronger in community.

Lives in Thatcher, Arizona

Lives in Bay City, Texas

Lives in Baltimore, Maryland

Lucy is 28 years old and is a registered nurse living in Baltimore, MD with her fiance (Kevin) and her dog (Amy). She enjoys singing, traveling, and being outdoors! Lucy is diagnosed with WNT10A syndrome and has grown up with missing teeth, decreased sweating, and fine hair/nails. Her brother and mom also have ectodermal dysplasia. Lucy attended her first NFED conference in 2005, and she has become more involved with the NFED in the past few years. She is very excited to be one of our newer Family Liaisons and can’t wait to start making new connections in the NFED community!

Lives in Massapequa Park, New York