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 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 almost 27 years of writing, posting, creating and photographing to tell amazing stories, raise awareness and educate others about the ectodermal dysplasias as the Director of Marketing and Communications. She has recently stepped back but will continue to use her passion and long history with the NFED by writing content and stories to share with our community.
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.
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.
Veronica Minard, MPNL
Director, Marketing & Communications
2021 – present
Veronica@nfed.org
618-566-6876
Veronica brings decades of nonprofit experience to her role at the NFED. She is the keeper of the brand and oversees all forms of communication to our current and prospective members, including social media, emails, blogs, mailings, website content and more. She is inspired by and loves telling the uplifting stories of our members. Veronica hopes to grow awareness of and support for ectodermal dysplasias worldwide.
A loving and caring group of awesome people. Thank you for everything that you all do everyday. – Anthony
Board of Directors
Karl Nelsen, PA-C, M.S.
President
Anil Vora
Vice-President
Marianne Vermeer
Treasurer
Keith Throm
Secretary
Mary Kaye Richter
Honorary Member
Jack Kriz
Patient Care Council
Julie Claeys
NFED Family Member
Timothy J. Fete, Sr., M.D., MPH
Retired from University of Missouri Health Care
Lonnie Johnson, DDS, Ph.D.
University of Colorado-Anschutz Campus
School of Dental Medicine
Lisa Knobloch, DDS, M.S.
The Ohio State University
College of Dentistry
Jonathan Korostoff, DMD, Ph.D.
University of Pennsylvania School of Dental Medicine
John Stith, M.D.
Saint Louis University School of Medicine
Sarah Tevis-Poteet, DDS., P.A.
Private Practice, Dallas
Scientific Advisory Council
Chairman
Clark Stanford, DDS, Ph.D., MHA
University of Iowa College of Dentistry and Dental Clinics
Vice-Chair
Timothy J. Fete, Sr., M.D., MPH.
Retired from University of Missouri Health Care
Liaison from the Board of Directors
J. Timothy Wright, DDS, M.S.
University of North Carolina Chapel Hill
Members
Lauren Blieden, M.D.
Cullen Eye Institute
Clayton Butcher, M.D.
University of Missouri Internal Medicine and Pediatrics – Woodrail
Cynthia Marie Carver DeKlotz, M.D.
Janssen Research & Development – Immunology
Dorothy Katherine Grange, M.D.
Saint Louis Children’s Hospital
Brandon Hopkins, M.D.
Cleveland Clinic Head and Neck Institute
Mark Kiel, M.D., Ph.D.
Genomenon
Maranke I. Koster, Ph.D.
East Carolina University
Richard A. Lewis, M.D., M.S.
Baylor College of Medicine
Pilar L. Magoulas, M.S., CGC
Baylor College of Medicine
Patricia Marik, Psy.D., M.A.
Medical College of Wisconsin
Anubhav Mathur, M.D., Ph.D.
University of California – San Francisco
Beau D. Meyer, DDS, MPH
The Ohio State University
Kathleen Motil, M.D., Ph.D.
Baylor College of Medicine
Elaine C. Siegfried, M.D.
Saint Louis University School of Medicine
Raj Sindwani, M.D., FACS, FRCS
Cleveland Clinic, Head and Neck Institute
Ad Hoc Members
Karl Nelsen, PA-C, M.S.
NFED Family Member
Anil Vora
NFED Family Member