2023 NFED Impact Report

2023

IMPACT REPORT

A LETTER FROM THE EXECUTIVE DIRECTOR

Dear NFED families, friends, and supporters, At the National Foundation for Ectodermal Dysplasias (NFED), we believe in the power of togetherness for families facing the challenges of ectodermal dysplasias. Unlike many organizations focused on a single, rare disorder, we must take a broader approach. We know that more than 50 different and complex conditions fall under the ectodermal dysplasias umbrella, each affecting families around the globe in unique ways.

It’s true that this vast scope can be challenging. However, these challenges fuel our fire. With the unwavering passion of our donors, volunteers, and staff there’s a collective desire to make a meaningful difference in the lives of individuals affected by ectodermal dysplasias.

In 2023, this passion translated into concrete action. We championed the Ensuring Lasting Smiles Act (ELSA), supported the Edelife Clinical Trial for x-linked hypohidrotic ectodermal dysplasia (XLHED), and brought families together at our annual

conference – just to mention only the top three highlights.

But our greatest strength goes beyond specific programs. The NFED is steadfast in being a beacon of hope and a comprehensive resource connecting individuals, families, healthcare professionals, researchers, and legislators.

Because of so many of you, we are more than just an organization; we are an extended family. Thank you for supporting the ectodermal dysplasias community!

Mary Fete, M.S.N., R.N., C.C.M Executive Director mary@nfed.org

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

For more information, visit us online at www.nfed.org.

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2023 YEAR IN REVIEW

Because of You In 2023, we welcomed the 10,000th affected individual to the NFED family. In 2023 we grew by 361 affected individuals bringing our total to 10,301.

Here’s a glance at our work:

Community & Support Last summer, 213 people affected by 10 types of ectodermal dysplasias reached new heights together in Colorado at the Family Conference.

It was three magical days of learning, growing and bonding over life with ectodermal dysplasias.

“The NFED Family Conference has been a tremendous blessing to our family. The 2023 Family Conference created an avenue to meet with the new families and share ideas and opportunities available to help surf through the ordeals of ectodermal dysplasias. We also had the privilege of meeting with the regular families and catching up with one another. 2023 Family Conference time is considered a family vacation for us and we enjoyed every moment.”

– Rachel I., mother of Victor, XLHED

Treatment Assistance Program Because of you, we helped seven families afford dental treatment, genetic testing and cooling vests.

Our Treatment Assistance Program (TAP) is life changing for our families.

It is with your generous gifts we can continue to be a critical resource for families in need.

“Our family is touched beyond words. I cannot thank you enough for all of your help.

Brooklyn’s treatment would not be possible without your help and we are eternally grateful.”

– Ashley S. Parent of Brooklyn, HED

Dental Treatment Centers Our network of Dental Treatment Centers across the U.S. helped us connect Finlay, Beau and 25 others with dental experts.

Each received the care they needed to have a new smile. Yet, it is more than just a smile. These individuals can now speak more clearly, making communication easier.

But, it doesn’t stop there. They can also eat a wider variety of foods, opening their world to new experiences and improved nutrition.

“I feel extremely grateful for all the work that the NFED does for our patients. Thanks to the NFED, I met the Henderson family. Working with the Henderson family, it’s been truly a blessing. I am happy that here at UNC Chapel Hill we were able to offer options to provide Beau alternatives due to his multiple, missing primary teeth.”

– Dr. Miguel Simancas-Pallares, University of North Carolina at Chapel Hill, Beau’s dentist

Read Beau’s full treatment story here!

Read Finlay’s treatment story here!

Our Research Strides Thanks to the pioneering pre-natal research supported by the NFED, we are happy to report that six young boys affected by XLHED sweat normally, have had no respiratory illnesses and have an increased number of permanent teeth.

One of our fundamental pillars is our commitment to research to develop treatments and solve the mysteries of ectodermal dysplasias. In 2023, we were fortunate to have made great strides in several areas.

Our international team of researchers advanced efforts to better understand what causes skin fragility and wounds in the p63 syndromes. It’s a key first step towards developing healing therapies to prevent life-threatening complications.

A brilliant team of basic scientists, geneticists, and care providers have made significant strides in determining more accurate prevalence estimates for the common types of ectodermal dysplasia. They are in the process of publishing their findings, making this the first time we have precise numbers of new and existing cases of ectodermal dysplasias for a given point in time. This number is a useful measure in public health and helps us better understand the burden of the condition and need for treatment.

We are excited to share that the NFED approved funding for Drs. Nicolai Peschel and Dr. Holm Schneider to develop a safer way to diagnose x-linked hypohidrotic ectodermal dysplasia (XLHED) in babies before birth. This method would help pregnant women know if their child has the condition so they could consider treatment in the Edelife Clinical Trial.

Advocacy on Behalf of Ectodermal Dysplasias and other Congenital Anomolies

The NFED continued to connect our cause with Congress. Our bill leads in the U.S. House of Representatives and Senate, advocates, and staff focused specifically on the wording of the Ensuring Lasting Smiles Act (ELSA) to strengthen its chances of passing.

We rallied support for ELSA with an Advocacy Day on Capitol Hill where we had representatives from 38 states and Washington D.C. Our community of 172 advocates represented 10 different congenital anomalies and attended 153 meetings with legislators.

FINANCIAL SUMMARY 2023 Operating Revenue:

$1.66M

Contributions of Cash and Other Financial Assets Contributions of Nonfinancial Assets Fundraising Special Events Conference Registration Fees Sales of Publications/Promotional Items Investment Gains

“We donate to the NFED monthly because we understand the importance of NFED’s mission.

The money goes to help anyone with ectodermal dysplasia whether it’s research, contributing to the cost of dentures, help to get to annual conferences and more. The people with ectodermal dysplasias need and deserve a voice and the NFED is their voice.“ – Donna G. Grandmother of Noah, who is affected by AEC

2023 Operating Expenses:

$1.09M

Support Research Treatment Fundraising Management and General

2023 Operating Revenue Contributions of Cash and Other Financial Assets Contributions of Nonfinancial Assets Fundraising Special Events Conference Registration Fees Sales of Publications/Promotional Items Investment Gains

884,423 6,778 38,504 29,121 2,879 698,711

Total Public Support and Revenue $1,660,416

syndrome

2023 Operating Expenses Support Treatment Research Management and General Fundraising

521,415 258,933 191,396 15,690 108,699

Total Expenses

$1,096,133

Net Assets - End of Year

$4,372,914

Data is from our 2023 Audited Financials.

As we look to the future, we see success building on the horizon.

Here’s a peek at what we are working on in 2024 to expand support to families, improve diagnoses and identify better treatments.

The NFED is...

Educating families affected by XLHED about the Edelife Clinical Trial which is critical to help bring the first innovative therapy of its kind to market.

We believe families deserve to make an informed decision.

Passionately leading efforts to mobilize advocates to raise their voices for ELSA so that it is reintroduced and passed in the 118th Congress. Once law, it assures that families can get benefits for the dental care they need.

Convening international researchers in 2025 to exchange ideas to increase our understanding of the complex syndrome of incontinentia pigmenti (IP) and to accelerate treatment development.

Supporting a Natural History Study of Wound Healing. Individuals affected by p63 conditions will use a mobile device and custom app to photograph their wounds for researchers to analyze. The NFED is also planning a Wound Healing Workshop for international researchers in the Fall.

Gathering in Washington D.C. on July 7-9 for the Stand Together Advocacy Conference.

Creating mental health resources with the help of a child psychologist who joined the Scientific Advisory Council.

WHAT CAN YOU DO? Stay up-to-date.

Subscribe to our mailing list at nfed.org.

Make a generous, tax-deductible gift Visit nfed.org/donate

Contact us at NFED.org, info@nfed.org or 618-566-2020.