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. With 23 years of experience in nonprofit leadership, program development, and fundraising, Mary is deeply committed to advancing patient advocacy, support, and groundbreaking research. Under her leadership, the NFED has expanded services, increased funding, and launched transformative initiatives that empower individuals and families.

Passionate about creating sustainable change, Mary collaborates with stakeholders, donors, and the community to ensure that those affected by ectodermal dysplasias receive the resources, care, and support they need to thrive.

Becky leads our advocacy efforts to get the Ensuring Lasting Smiles Act (ELSA) passed in the U.S. Congress and trains advocates on how to share their story and advocate in all aspects of lives. As a member of the NFED community, she uses her personal journey to obtain health insurance coverage for her son Aidan, affected by X-linked Hypohidrotic Ectodermal Dysplasias (XLHED), to help others navigate the health insurance appeals/denials process. 

Becky also oversees our research program and coordinates logistics and manages research projects, conferences and special assigned projects. First and foremost, Becky is a mom to three boys that provide her with motivation to help others along their journey. Becky encourages all members of the ectodermal dysplasias, congenital anomaly, craniofacial, rare disease and under-served communities to raise awareness and advocate on a daily basis.

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. Jodi enjoys walks on the beach, yoga and any time her family is all together.

Kayla ensures our internal systems run smoothly and efficiently. She manages daily office functions, oversees logistics for Board and staff meetings, and maintains our database with precision.  From donation processing and reporting to technology management and compliance, her work strengthens every part of our operations and supports the success of our fundraising, advocacy, and research programs.

With a passion for creating order and streamlining processes, Kayla is a go-to resource for data insights and problem-solving. Outside of work, she enjoys cheering on her kids, rooting for the Cardinals and Blues, and unwinding with a good book or true crime podcast; all fueled by family, faith, and plenty of iced coffee.

Greg leads our development and communication efforts. He is raising awareness through networking and storytelling and discovering the resources we need to advance our mission. Greg also builds relationships with individuals, families, organizations, foundations and corporations and promotes giving. Greg guides the strategy and development of all communications, marketing, public relations and brand management. Greg is a diehard baseball fan, loves a good cup of coffee and morning poetry, and enjoys life with his family.  Learn more about Greg.

Isabella supports our Director of Development and Communications in executing development strategies. She manages key development projects, oversees grant processes, engages with donors, and supports family-led fundraising initiatives. She especially enjoys working closely with our incredible NFED family fundraisers to help bring their ideas to life. Isabella is often found tackling grant proposals to ensure we secure and maintain vital funding sources. Outside of work, she enjoys exploring the Oregon wilderness with her family, horses, and dogs, or relaxing with a good book and a cup of tea. Learn more about Isabella.

Andi plays a key role in driving awareness and engagement of all things NFED – both digital and print. She works closely with our team to craft compelling communications content, manage digital marketing campaigns, oversee website, email, and social media efforts, and build meaningful connections with our community. She also loves staying active with her pup and hunting for thrift bargain finds. Learn more about Andi.

Kristin Matus-Kelso serves as the Family and Community Programs Coordinator and works alongside the Director of Family and Community Programs. While new to the staff as of June 2025, she’s not new to the NFED. Kristin has been a member since her daughter, Ally, was born in 2004. Ally is affected by ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome. She and her family engaged quickly with the Foundation, becoming regulars at Family Conference and hosting the annual Rally for Ally fundraiser from 2005-2019. Learn more about Kristin.

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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, DDS, 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, DDS, M.S.
University of North Carolina Chapel Hill

Members