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Annual IMPACT Report Thanks for supporting the National Foundation for Ectodermal Dysplasias (NFED). Here’s how your support made a difference in 2018:

243 attended Family Conference in Portland, Oregon.

53 parents and children were awarded financial scholarships so that they enjoy our once-in-a-lifetime experience at Family Conference.


“So grateful we were able to attend our first Family Conference and connect with other families affected by ED.”

people from 30 states advocated for the Ensuring Lasting Smiles Act (ELSA) for NFED Adovcacy Day on Capitol Hill.


— Sheila Aumann

new affected individuals registered with the NFED.

2 new Dental Treatment Centers were added, bringing the total to 18 nationally. Welcome, Ozark Prosthodontics and The Dental College of Georgia at Augusta University.

185 family fundraisers raised $209,793 for the NFED.

“We’re going to keep educating our lawmakers about ectodermal dysplasias and Ensuring Lasting Smiles Act until it is passed.”

Empowering others. Together! The mission of the NFED is to empower and connect people touched by ectodermal dysplasias through education, support and research.

— Sam Gansebom 212





125 69



528 21


The NFED supports families and individuals affected by ectodermal dysplasias in all 50 states as well as 93 countries.




53 88



16 17




344 72





42 220


70 66 505


17 126




40 190 21 75 190


70 338

8,100 + affected individuals served in the U.S. and worldwide since NFED’s inception.

January We shared free educational videos from our 2017 Family Conference workshops with our NFED families on our website.

February Ectodermal Dysplasias Awareness Month - 25 families and individuals created Facebook Fundraisers that raised almost $17,000. Families shared our posts while funding our important programming.

March NFED Executive Director, Mary Fete, joined others from the Friends of the National Institute of Dental and Craniofacial Research (NIDCR) to advocate for increased dental research funding.

April Groundbreaking x-linked hypohidrotic ectodermal dysplasia (XLHED) research findings from a study on Corinne and her twin babies (pictured right) were published in the New England Journal of Medicine. April was volunteer month. The NFED had close to 500 active volunteers who dedicated more than 5,000 volunteer hours to the NFED in 2018.

“For me, volunteering is who I am. It is as natural as the sunrise and sunset. Volunteering is a way of giving back to the community and leaving the world in a better place for each child whose life I have touched.” —D  r. Kathleen Motil: Donor, Scientific Advisory Council, and Volunteer

May Researchers continue to study complexities with p63 syndromes. Other researchers announced new incontinentia pigmenti (IP) study. Roy Moffitt joined the NFED Board of Directors and Beau Meyer, D.D.S., Ph.D. joined our Scientific Advisory Council.

June Prep time for Family Conference and our second Advocacy Day on Capitol Hill! All hands on deck!

July The NFED hosted its Family Conference in Portland, Oregon followed by our second NFED Advocacy Day on Capitol Hill. The NFED held it’s first Boost the Cure blitz campaign during Family Conference. Together, we raised over $65,000 in just three days.

August ELSA was introduced with bi-partisan support in both the Senate and House! Dr. Holm Schneider announced he will continue the Natural History and Outcomes in XLHED study.

September Corporate executives Krista Basile and Richard Stratz joined the NFED Board of Directors.

October Drs. Johanna Hammersen & Holm Schneider found that XLHED could be diagnosed via sonogram in utero. Halloween Bash, the NFED’s annual online event, raised close to $100,000.

November The NFED brought together the Board of Directors and Scientific Advisory Council for a joint meeting to discuss research, advocacy and future programming.

“Mariella has always been a confident young lady, but she now feels much more like a normal teenager. Mariella loves her new smile and the positive changes that come with it.” — Mariell’as  mother, Kathy Sierra Mariella received funding from our Treatment Assistance Program for her beautiful new smile.

2018 Financials Total Income: $666,648 Contributions $685,751

Sales, In-Kind, Misc. $35,248

NFED families and supporters raised over $34,000 for the NFED on Giving Tuesday.

December Thanks to our generous supporters, the NFED wrapped up the year with over $780,000 raised in 2018!

Visit to find out how you can support, get involved and spread the word today. Thank you, Annual Diamond and Platinum Sponsors: Louis J. and June E. Kay Foundation, TripAdvisor, Straumann Corporation, Moss Family Foundation, Broadridge Securities Processing Solutions, Inc., and The Louis & Gladyce Foster Family Foundation!

Investments -$148,970

Special Event Registrations Conference $56,087 Registrations $38,532

Total Expenses: $701,344 Support $334,084

Unclassified $892 Mgt/General $11,327

Research $100,259

Treatment $146,665 Fundraising $108,117

*Visit in June to see the completed audit. 6 Executive Dr., Ste. 2 Fairview Heights, IL 62208-1360 (618) 566-2020

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2018 NFED Annual Report  

2018 NFED Annual Report  

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