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.
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.”
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 USA, LLC
The Vora Family
NFED’s 2019 Family Conference in Chicago was one of our largest ever, with 426 attendees representing at least 10 forms of ectodermal dysplasias.
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.” – TrishRead Kambree’s Story
KNOWLEDGE IS POWER
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
HELPING OUR FAMILIES
- In 2019, NFED added 2 new Dental Treatment Centers: Dental & TMJ Specialists of Greater DC in Bethesda, Maryland. and Eastman Institute for Oral Health in Rochester, New York. Our total number of participating treatment centers is up to 20.
- With the help of our donors, we provided the Phillips family in Louisiana with window air conditioning units, and we provided cooling vests for two-year-old Delvin in Utah and two-year-old Kevin in Pennsylvania.
- 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
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
“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).
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
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 firstname.lastname@example.org.Volunteer
|Special Event Registrations||$66,150|
|Sales, In-Kind, Misc.||$35,234|
* 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.