We Are on a Journey

Since 1981, our mission has focused on families affected by ectodermal dysplasias. We are proud of the extraordinary accomplishments we have achieved in our nearly four decades.

Read Our Mission and History

NFED Leadership

A ROAD LESS TRAVELED

While ectodermal dysplasias are rare, research shows they occur much more often than once thought. Data suggests 3.5 of every 10,000 children born are affected by some form of ectodermal dysplasia.

  • There may be more than two million living with an ectodermal dysplasia worldwide, with up to 116,000 in the United States. Many of these individuals have not yet been officially diagnosed.
  • There are more than 100 different types of ectodermal dysplasia; many individuals have yet to identify their specific syndrome.
  • Because ectodermal dysplasia is sometimes confused with other less severe conditions, it is often misdiagnosed, misunderstood, and in some cases,  goes undiagnosed. As a result, funding for the near non-existent treatment and research is difficult to secure.
  • Symptoms of ectodermal dysplasias include a combination of two or more anomalies in hair, nails, sweat glands, teeth, and skin.

Today, the NFED proudly serves more than 8,800 families worldwide.

Erin and Shannon Brown

See Me, Not My EEC

“My name is Elizabeth and I am an artist. I am also modern, old fashioned, hardworking and loyal. I am adventurous yet cautious, petite yet feisty. And I am affected by a rare birth syndrome called ectrodactyly-ectodermal dysplasia-clefting (EEC) which affects my skin, eyes, teeth, fingers, hair and other systems of my body. You might look at my missing fingers or bent fingers and other skeletal deformities and label me as disabled. But that is not how I or other people born with physical differences see us. We are complete and complex just like all of you reading this.”

Inside the raindrops are reflections of a sunset complete with trees and clouds. But, you have to look very closely to see this display, just as you would need to look past my physical differences to see my true nature. There is beauty beyond the gnarled, surface scars when you take the time to look within the character.”
– Elizabeth Hovemnan
Read Elizabeth’s Story

THANK YOU TO OUR MAJOR PARTNERS

(annual gift of $20,000 and above)

Delta Theta Tau Sorority Inc.
The Geismar Family
Incontinentia Pigmenti International Foundation
The Louis & Gladyce Foster Family Foundation
The Louis J. and June E. Kay Foundation
Straumann Corporation
Straumann USA, LLC
The Vora Family

2019 Donor List

POWERFUL PROGRAMS

Family conference attendees standing in front of the hotel.

NFED’s 2019 Family Conference in Chicago was one of our largest ever, with 426 attendees representing at least 10 forms of ectodermal dysplasias.


“Our family found peace at our first NFED Family Conference.”
– Trisha Stoller

Trisha Stoller lives in Bluffton, Indiana, with her husband, Landon, and their two children.

After four years of searching, the Stoller family found the 2019 NFED Family Conference and finally discovered what their young daughter, Kambree, was struggling with…an unknown form of ectodermal dysplasia.

“We purchased our tickets and the NFED quickly became very dear to our hearts and truly was an answered prayer for our family! At the Conference, we were able to see and witness first hand that each of these beautiful children at the conference as well as our daughter, Kambree, all resembled each other in one way or another. It was the most beautiful sight and gave us unexplainable peace.” – Trish

Read Kambree’s Story

KNOWLEDGE IS POWER

Dr. Tim Fete (left) answers questions for Jonathan Weil and Beth Tascione.

Helping Our Families Understand Ectodermal Dysplasia

The NFED stands with open arms to welcome families who have just been diagnosed, to answer their questions, to point them toward resources, and to help calm their fears. We provide individuals and families affected by ectodermal dysplasia with a place to turn for reliable information, support, a peer network and hope. Our website and publications empower individuals and families with facts and experience-based knowledge that even their doctors often cannot provide.

The website is wonderful, the people are wonderful, everybody is very welcoming, very accommodating.  – Lisa Schneider

 “I am very, very thankful that I have found support as a mother, in learning how to be the best advocate I can be for my son. So thank you NFED for everything you’ve done for our family. I’m really excited to grow with you guys!”  – Sara Gilbert

HELPING OUR FAMILIES

Treatment Assistance

Dr. Tim Wright gives a dental consult at the 2019 Family Conference.
Kierra
  • Kierra Male, a young South Carolina school teacher, received a new wig. (She was the hit of her 4th grade class!)

We are determined that despite economic challenges, every person with ectodermal dysplasia has the fundamental right to:

  • A functional set of teeth,
  • The ability to keep cool, with air conditioning and cooling vests, and
  • A head of hair they can be proud of – just like their friends!

We offer need-based assistance to families seeking help in providing these for their child.

Learn about our Treatment Programs

SEARCHING FOR ANSWERS – DELIVERING HOPE

Promising Research

The NFED is dedicated to finding a cure. We have funded research studies at more than 40 centers around the world and have sponsored numerous scientific conferences for specific syndromes, classification and therapies. NFED-funded research projects have identified genes for many forms of ectodermal dysplasias, established treatment protocols and characterized many of the syndromes.

  • $3.6M invested in research since 1987
  • 118 research studies and trials
  • 1,000+ participants from NFED families
The FDA granted the Breakthrough Therapy Designation based on the findings when Prof. Holm Schneider successfully treated three males affected by XLHED with ER-004 while in-utero. ER-004 is a bio-engineered protein that replaces the nonfunctioning protein missing in the EDA gene that causes XLHED.

“Obtaining the Breakthrough Therapy Designation for ER-004 has been made possible by the efforts of the NFED and the XLHED patient community at large over the last 30 years.”

– Caroline Kant, CEO of EspeRare

2019 Research Grants were provided to:

  • Richard A. Lewis, M.D., M.S. at Baylor College to help our individuals/families identify what type of ectodermal dysplasia affects them.
  • Dr. Angus Clark at Cardiff and Vale University – “Development of Non-invasive Prenatal Diagnosis (NIPD) Assay for X-linked Hypohidrotic Ectodermal Dysplasia (XHED)”
  • Tim Houser, M.S. at cyberDerm, Inc. for his project: “Dynamic Capacitance Imaging of Sweat Gland Distribution and Activity”

In addition to ongoing XLHED research, the NFED provided access to patients to Dr. Maranke Koster for her research for the p63 syndromes. Nineteen individuals provided skin biopsies for her study, “Towards a cure for skin erosions in AEC patients,” to develop a treatment using stem cells to treat skin erosions,

Read How We Are Pioneering Research

FIGHTING FOR A SMILE

Advocacy & ELSA

  • 2019 Advocacy Day on Capitol Hill on July 17, 2019 in Washington, D.C.
  • 83 individuals joined us, representing 22 states (CO, DC, ID, IL, IA, LA, ME, MD, MA, MI, MN, MI, MO, NM, NY, OK, PA, SC, TN, TX, VA, WI)

One of the NFED’s highest priorities is leading the way for passage of the Ensuring Lasting Smiles Act (ELSA).

Congressman Denver Riggleman (R-VA) and Senator Tammy Baldwin (D-W) welcomed NFED families to Capitol Hill.

What would passing ELSA mean for our families?

  • Medical insurance must cover the medically necessary dental treatment associated with ectodermal dysplasias.
  • No more fighting the insurance company and no more denials!
  • Families no longer need to decide if their child gets a full set of teeth or a college education.

In order to become law, ELSA must pass in the House and Senate with a simple majority by the end of 2020. If it does not, the entire process must begin again, forcing a delay of several additional years.

Advocate for ELSA

MANY HANDS MAKE FOR LIGHT WORK

NFED Volunteers

What is the National Foundation for Ectodermal Dysplasias? It’s you!

The NFED is always looking for volunteers to help. YOU can make a difference today by joining our team of Helping Hands. There are so many ways to help – become a family ambassador, help us at the Family Conference, advocate for the passage of ELSA, help with foreign language translation, or hold your own fundraising or awareness event. Have you got an idea? We’d love to hear from you.

  • In 2019, more than 500 volunteers helped the NFED serve our children and families!
  • In total, volunteers logged in nearly 6,000 hours. Wow!
  • 15 families hosted local events to raise money and awareness for the NFED.

Meet some of NFED’s 2019 Family Fundraising Heroes:

3 on 3 Basketball – Host, Jack Geismar – in honor of Ryan Geismar

Print Auction – Host, Levi Hawken

Cookies for a Cure – Host, Janet Johnson – in honor of Alex Johnson

Blue Jean Days – Hosts, Jim & Sue Kluzek – in honor of Christina Kluzek

Half-Marathon Disney World Fundraiser – Host, Caitlin Brown – in honor of Suzanne Brown

Fishing Trip Fundraiser – Hosts, Bob & Debbie Reed – in honor of the Walker family

Alex Super Smiles 5K – Hosts, Tim & Julie Carroll – in honor of Alex Carroll

Sweat It Out 5K – Hosts, Hank & Jamie Duke – in honor of Nicholas Duke

Tootsie Roll Campaign – Host, John Devaux – in honor of Kayla Hafliger

15th Anniversary Rally for Ally – Hosts, The George-Kelso-Matus Families – in honor of Allyson Kelso

Merle Musical Festival – Hosts, The Day Family

Bruno’s Golf Outing  – Hosts, The Swierczewski Family – in honor of Ed Swierczewski and in memory of Bruce Swierczewski

Minnetonka 5K – Hosts, Karl & Nancy Nelsen & Tyler & Erin Nawrocki – in honor of Sammi Nelsen & Ava Nawrocki

Oliver’s Bites & Brews – Hosts, Matt & Vanessa Nehrkorn – in honor of Oliver Nehrkorn

Jayden’s Halloween Hustle – Hosts, Joe & Shelly Pagano – in honor of Jayden Clark

Halloween Bash – Hosts, Keith & Ruth Geismar and Bruce & Alice Geismar – in  honor of all those affected by ectodermal dysplasias and Ryan Geismar

Bon Fire Fundraising Event – Hosts, Dave & Kathy Reidenouer – in honor of Nikko Vecchini

To learn more, contact Lea Richardson at 618-566-6875 or lea@nfed.org.

Volunteer

2019 FINANCIALS

Income

Contributions$823,099
Investments$394,846
Special Event Registrations$66,150
Conference Registrations$59,185
Sales, In-Kind, Misc.$35,234
Total Income$1,378,514

Expenses

Support$396,886
Research$203,851
Treatment$159,932
Fundraising$122,866
Management/General$12,151
Total Expenses$895,866

* Data from NFED’s 2019 Audited Financial Statements


TOGETHER, WE ARE THE NFED!

The National Foundation for Ectodermal Dysplasias is made up of more than 10,000 individuals, families, medical and educational professionals, and organizations determined to bring awareness, support, treatment, hope and answers to all those battling ectodermal dysplasia worldwide.

Your gift gives a child with ectodermal dysplasia the ability to say “Yes!” to life.

Donate Now

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