Leadership

Our Staff

Mary is our fearless leader who brings two decades of nursing and case management experience and her passion to make a difference. She oversees everything we do. She leads our Research Program and finds investigators willing to study the conditions. She also searches for new ways to make dental care affordable and accessible for families. She’s the energetic force who charts the NFED’s future and leads with her heart in all that she does.

Becky leads our efforts to get the Ensuring Lasting Smiles Act passed. She also helps families affected by ectodermal dysplasias access the dental treatment they need. She can talk you through the process of finding a care provider and how to fund that care. She can also help you understand the insurance process and how to apply for financial assistance from the NFED and for free dental implants. Becky manages the Dental Treatment Centers. She also strives to expand our research program and coordinates logistics for research projects.

Kelley spends her time talking to people affected by ectodermal dysplasias and their families. She welcomes new families, lends a listening ear, celebrates their accomplishments and shares in their frustrations. Kelley provides support to families for what they need. She connects them to other families, doctors, dentists and resources. She also plans our largest event that brings families, doctors and researchers together every year, the Family Conference. If you need help in advocating in schools or working through the insurance appeals process, Kelley is your gal.

Jodi has dedicated 30+ years to the NFED family and has served in various roles. Now, she is the Communications Specialist who tells amazing stories, raises awareness and educates others about the ectodermal dysplasias. She writes content and blogs, gives presentations and helps the marketing and communications team with whatever tasks needed.

Kayla is our staffer who helps in lots of areas. She is our executive director’s right hand, tending to the details of the research and treatment programs. She plans logistics for meetings of the staff, Board and Councils and makes sure the office has supplies and working computers and copiers. Kayla spends a lot of time in our database, keeping our records up-to-date and providing staff with queries and reports. She selects and orders our inventory of cool NFED gear and items.

Greg leads our development and communication efforts. He’s raising awareness as well as the resources we need to advance our mission. He builds relationships with individuals, families, organizations, foundations and corporations and promotes giving. Greg will guide the strategy and development of all communications, marketing, public relations and brand management. He also loves to run – whether that’s in races or after his four kids! Learn more about Greg.

Lea manages and recruits volunteers to help our staff in all areas of operations. She promotes opportunities, trains them on their tasks, and connects and supports them. Lea finds creative ways to recognize them for their time and efforts. She works with families to plan and execute their fundraisers. She also processes donations and assists with bookkeeping. Lea is from The Netherlands and enjoys building relationships with families. She can speak several languages, which is helpful when translating communications for us.

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A loving and caring group of awesome people. Thank you for everything that you all do everyday. – Anthony

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Scientific Advisory Council

Chairman

Clark Stanford, D.D.S., Ph.D., M.H.A.
University of Iowa College of Dentistry and Dental Clinics

Vice-Chair

Timothy J. Fete, Sr., M.D., MPH.
Professor Emeritus, University of Missouri School of Medicine

Liaison from the Board of Directors

J. Timothy Wright, D.D.S., M.S.
University of North Carolina Chapel Hill

Members