Child holding a sign that reads "Thank you!"

2021 Annual Impact Report

In 1981, a new organization was formed with a simple but incredibly important purpose—to help all those impacted by ectodermal dysplasias. Now, forty years later, the National Foundation for Ectodermal Dysplasias (NFED) is recognized as the global leader on all things ectodermal dysplasia. In 2021, we provided support to nearly 10,000 individuals worldwide.

Our mission is to empower and connect people touched by ectodermal dysplasias through education, support and research.

NFED History — A 40-year track record of success!

Thank you for supporting the National Foundation for Ectodermal Dysplasias (NFED). Thanks to you, 2021 was a year of notable achievements!

350

family members and friends volunteered their time and talent as NFED board and council members, family liaisons, social media ambassadors, family fundraiser hosts, writers and more.

172

Family Fundraisers brought in over $206,000 in support for the NFED.

437

new affected individuals registered with the NFED and joined the family.

1,257

unique individuals and organizations gave 2,146 financial gifts to the NFED.

80

research experts from around the world gathered for the NFED’s October International Research Conference. Together, we are charting a course for the future of ectodermal dysplasias research!

401

people from 48 states plus Washington, D.C., advocated for the Ensuring Lasting Smiles Act (ELSA).

2

new Dental Treatment Centers were added to the NFED referral network, bringing us to 24 total providers nationwide. Welcome to:  NYU College of Dentistry and the University of Utah School of Dentistry.

5

individuals from across the country received treatment assistance for purchasing dentures, wigs and cooling items.

“No matter how little you are, it’s important to start learning about your syndrome so that you can begin to advocate for yourself. Embrace your uniqueness. Do what feels right for you.”

Olivia Daniels

Mary Fete holding Bennett, a young boy with XLHED

Together, We’re Changing the Future

At the end of 2021, the NFED celebrated its official 40th Anniversary – and the many successes we’ve achieved over the years. We have always had very big dreams, and we know we have to work hard to make them come true. But we are determined to make the world easier and better for all individuals affected by ectodermal dysplasias. 

As we move forward, our hope for the future of the NFED is continued growth and success in each pillar of our mission:  Education, Support, and Research.

We still have much work to do in understanding many of the syndromes and to understand the genetics and pathway functions of these syndromes. Learning this information will unlock the treatment and cures we are working toward.

Our role is simple but very important. Over the next 40 years, the NFED must lead the charge to change the future for everyone with ectodermal dysplasia. This takes financial resources, dedicated staff and community, and interested researchers. This takes you! 

You are the NFED. You are the backbone of our successes.  

With thanks and friendship,

Mary Fete's Signature

Mary Fete, MSN, R.N., CCM
Executive Director


Discovery

The NFED has established a research fund to provide seed grants in support of project proposals that show promise in advancing early diagnostics and treatment therapies for symptoms that cause significant challenges for individuals affected by ectodermal dysplasias.

In exciting work following October’s International Ectodermal Dysplasias Research Conference, small groups of experts are continuing to work together in several key areas: improved wound healing, better diagnostic tools leading to earlier diagnosis, establishing a new medical registry and biobank. 

Internatinal Research Conference Family Panel

There is also a workgroup focusing on ways that we can establish better prevalence information. Accurate prevalence data is critical and helpful to multiple stakeholders including; pharma, legislators, donors and many other entities to understand where their resources and help are most needed and best utilized.

See the Research Timeline

2021 – Filled with Achievements


January

The NFED launched “Conference from your Couch,” an eight-part NFED webinar series focused on specific care and treatment topics for individuals affected by ectodermal dysplasias. The first episode of this series, Dental Treatment Options for Adults, took place on February 9, 2021.

February

In celebration of Ectodermal Dysplasias Awareness Month, the NFED and all our families joined together to increase public knowledge of ectodermal dysplasias and those who are affected.

March

The Ensuring Lasting Smiles Act (ELSA) was reintroduced in the 117th Congress with strong bipartisan support and an amazing 161 original co-sponsors.

April 

On April 28, more than 400 advocates participated in Virtual Advocacy Day on Capitol Hill. Participants contacted their national legislators to advocate for ELSA and secure additional support from their senators and representatives.

May

The insurance section on the NFED’s website was revamped to better help our families navigate the challenges they face in the form of insurance denials and appeals. The section is easier to navigate, includes a comprehensive resource guide and a Family Roadmap to Resources with step-by-step directions.

June

Dr. Amy Paller and Northwestern University/Ann & Robert H. Lurie Children’s Hospital of Chicago invited adolescents affected by ectodermal dysplasia to participate in a research study on the readiness to transition to an adult model of health care. This online survey closed last April and was endorsed by the NFED.

July

EspeRare and Pierre Fabre announced that the EDELIFE clinical trial, that will study the safety and effectiveness of ER-004 in treating XLHED in males, has been posted on ClinicalTrials.gov.

August

On August 28, the NFED held its first virtual Family Trivia and Research Celebration. This exciting family event allowed our friends and families to gather in the midst of a pandemic, even if just virtually. 

September

Throughout the month of September, three different families hosted fundraisers benefiting the NFED: Bruno’s NFED Golf Outing, Nikko for NFED and the Minnetonka 5K. Combined these family fundraising events raised over $100,000 to support the NFED’s mission. 

October

For four days in October, 80 experts from around the world came together to chart a course for the future of ectodermal dysplasias research at the International Ectodermal Dysplasias Research Conference in Charlotte, North Carolina.

November

XLHED Clinical Trial of Prenatal Treatment, called EDELIFE Study, begins in Germany at the University Hospital of Erlangen with Dr. Holm Schneider. The EDELIFE Study is sponsored by the EspeRare Foundation and the Pierre Fabre Group.

December

The NFED celebrated its 40th anniversary on December 24.

Thank You to All Our Donors!

Major partners with annual giving of $20,000 and above
The Louis & Gladyce Foster Family Foundation
The Geismar Family
Robert Hubbard & Dr. Heidi Hubbard
The Hubbard Broadcasting Foundation
Incontinentia Pigmenti International Foundation
Louis J. and June E. Kay Foundation
Oracle America, Inc.
Brian & Evelyn Randall
Straumann Corporation
The Vora Family

Child holding a sign that reads "Thanks you!"

We can only create awareness, achieve breakthroughs, and foster life-changing treatments with your help.

So from all of us at the National Foundation for Ectodermal Dysplasias, thank you to our incredible supporters!

View our full 2021 Donor List.

The Power of Families

Nothing shines brighter than our families. Thank you to all our family fundraising & Facebook fundraising hosts – for every AmazonSmile participant, Trivia attendee, #GivingNFEDTuesday donor and Halloween Bash participant. You have made a tremendous impact in 2021!

“We’re coming together to overcome obstacles and challenges, working together to do fun and good things.”

Dave Reidenouer
  • The Reidenouer family – Nikko for NFED 
  • The Geismar family – NFED Halloween Bash 
  • The Swierczewski family – Bruno’s Golf Outing 
  • The Nelsen and the Nawrocki families – Minnetonka 5K 

“I am extremely grateful to the NFED for being the family that they are and that they have been to our entire family.” 

Virginia Higgins
Virginia Higgins

From Virginia’s 1990 letter to Mary Kaye… “Thanks for always being there with a ready answer, and if you didn’t know the answer, doing your darndest to find it out. I couldn’t smile without you!”

Financials


DONOR INCOME* 
Contributions & Grants$1,317,675 
Sales, In-Kind, Misc.$13,255
Special Event Registrations$46,845
Total Donor Income$1,377,775
NON-DONOR INCOME*
Gain on Investments$486,159 
COVID PPP Forgiveness$94,772 
Employee Retention Credits$88,501
Total Non-Donor Income$669,432 
OPERATING EXPENSES*
Family Support$308,948 
Treatment$198,376 
Research$216,433 
Fundraising$158,059 
Management/General$13,069 
Total Operating Expenses$894,885

*Data is from the NFED’s 2021 Audited Financials. The NFED’s internal standards require that we maintain a minimum reserve balance to cover operating expenses for a minimum of six months up to a maximum of three years (as recommended by the National Health Council and the Better Business Bureau).


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