The Time for a Major Research Campaign is Here. Join us to

Our Mission

To empower and connect people touched by ectodermal dysplasias through education, support and research.

Our Vision

The National Foundation for Ectodermal Dysplasias will be a recognized leader among health-related nonprofit organizations and will be known for providing comprehensive services with loving care to individuals affected by ectodermal

dysplasias and their families; for helping individuals and families benefit from early diagnosis and care, and for spearheading research that ultimately develops a cure.

6 Executive Dr., Ste. 2Fairview Heights, IL 62208-1360

www.nfed.orginfo@nfed.org618-566-2020

Impact Cures, Now!

A CAmpAIgN For ECToDErmAL DySpLASIAS rESEArCH

Ectodermal dysplasias are rare and not at the forefront of researchers’ minds. It’s up to us to be the catalyst

For our families to have better treatments and ultimately, cures, the NFED must continue to be the catalyst.

Making Your Gift. Making History.

Help Us Reach our $300,000 Campaign Goal

Here’s your opportunity to be heroic. Join us in blazing the trail for ectodermal dysplasias research that leads to better treatments – and cures! make a gift that is best suited for you. you might consider a pledge that you can pay over three years.

Donor Recognition Levels

$50K and Up — president’s Society$24K - $49,999 — Leadership’s Society$10K - $23,999 — Society of Friends$5,000 - $9,999 — guardian $1,000 - $4,999 — Trailblazer$500 - $999 — Ambassador$100 - $499 — partner$99 and Under — Friend

you can make your gift or pledge online at www.nfed.org, by calling Brittany at the NFED office at 618-566-6874 or by mailing it to NFED, 6 Executive Dr., Ste. 2, Fairview Heights, IL 62208-1360.

Campaign Components

•FundresearchtodevelopEDI200asatreatmentinuteroforXLHED–$50,000 •Fundthefollow-upresearchfortheNewbornXLHEDClinicalTrial-$25,000 •Fundallfollow-upresearchfortheXLHEDNaturalHistoryProjectbeganby

Edimer pharmaceuticals - $25,000 •Fundresearchforp63syndromesexploringtreatmentprotocolsforskin

erosion and vision loss - $50,000 •Grantseedfundsfor#newresearchprojectsdedicatedtospecific

syndromes - $75,000 •FundtheInternationalEctodermalDysplasiasClassificationProject–$75,000

Impact Cures, Now!

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The Time to Act Is Now225 YEARS AGO, a researcher named Danz published the first findings of two boys with congenital absence of hair and teeth.

100 YEARS AGO, a scientist named Weech named the condition “ectodermal dysplasia.”

36 YEARS AGO, families affected by ectodermal dysplasias created the National Foundation for Ectodermal Dysplasias (NFED). Their mission was to be a catalyst for research that would answer their questions, develop treatments for their children and ultimately, identify cures.

SINCE, the NFED has been the sole force in the world to blaze this trail. Despite the long history of ectodermal dysplasias, research focus and expansion has only taken place in the last three decades. We are proud of the extraordinary successes we have achieved in a relatively short amount of time and with a small amount of money. Lives have been saved. Treatments have been developed. Hope has been given.

Research we funded…

•hasidentifiedthegenesforseveralectodermaldysplasias •developedtreatmentprotocolsforlife-threateningskinerosionsinthep63

syndromes •significantlyexpandedaboutwhatweknowabouttheectodermal

dysplasias and documented it in the medical/dental literature •hasbroughtapotentialtreatmenttohumanclinicaltrialsforthemost

common type of ectodermal dysplasia!

TODAY, we stand at an unprecedented time in history. preliminary findings from research we began in the 1980s and advanced shows great promise for eradicating two symptoms of the most common kind of ectodermal dysplasia. It’s extraordinary! Without funding, this research study and others will not continue.

We must fund this work. We must also promote research to find similar treatments for the other 180+ ectodermal dysplasias. But, the work doesn’t end there. We are committed to finding cures for all ectodermal dysplasias.

Help Us Continue Leading Edge TreatmentsDeveloping Leading Edge Treatments

Giving Children Working Sweat Glands and A Full Set of Teeth

We must continue to support research of a protein called EDI200 that has now been administered to several babies in utero who have x-linked hypohidrotic ectodermal dysplasia(XLHED).Dr.HolmSchneider’spreliminaryfindings provide great hope!

If successful, this treatment will give babies born affected byXLHEDworkingsweatglandssotheycanregulatetheir own body temperature. No longer will families have fears about letting their children ride their bicycles or playing outside on a warm summer day because they may overheat. Athletes could play sports without the need for

cooling breaks while the rest of the team plays on.

If successful, this treatment will enable them to develop a mouth full of teeth thatarenormalinnumber,sizeandshape.TreatingbabieswithXLHEDinutero with EDI200 could save families a lifetime of exorbitant dental care costs. No child would need to wear dentures or be made fun of because of theirsmile.PeopleaffectedbyXHLEDcouldhavethepowertosmile,eat,andspeak with confidence!

To support bringing this research to a clinical trial, we are committed to finishingtheXLHEDNaturalHistoryStudy which began with the completed NewbornXLHEDClinicalTrial.Thestudy follows a group of people withXLHEDoveraperiodoftimeand collects health information to understand how the condition naturally progresses. Also, we will support follow-up research on the three babies in the United States who participated in the NewbornXLHEDClinicalTrial.

Saving Their Skin, Saving Their Lives

We must continue to fund research so that we never lose a baby again due to extensive skin erosions experienced in ankyloblepharon-ectodermal dysplasia-clefting (AEC) syndrome. For the babies who survive, there must be a treatment which enables them to grow healthy skin and at a faster rate. A mother should be able to touch her baby without fear of the skin sloughing off. A toddler should beabletofallwithoutcausingamajorwoundorlife-threatening infection. maranke Koster’s exploration of stem cells to regenerate healthy skin shows great promise for a potential life-saving treatment.

Seeing Clearly

people affected by ectrodactly-ectodermal dysplasia-clefting (EEC) syndrome deserve a life-time of being able to see. many experience significant vision loss and we want to know why. We are dedicated to supporting maranke Koster’s study to understand why the gene for EEC syndrome causes stem cells in the eyes to malfunction. This leads to significant vision impairment. Her team hopes to find a way to use a person’s own stem cells to create a new cornea in a petri dish.Thepersonwouldbelesslikelytorejectthecorneatransplantbecauseituses their own cells. This treatment, if successful, would assure that our families affectedbyEECwouldmaintainandenjoytheirvisionfortheirlifetime!

Expanding Knowledge

There is little or no research taking place for most of the 180+ different types of ectodermal dysplasia. genes have been identified for only about 60 of these types. The families affected by them have more questions than we have answers. We must spark interest in these syndromes and provide seed funds to researchers to study them. Small grants provide scientists with leverage to get financial support from larger funding sources. We have been successful in doing it for three syndromes.XLHED,AECandGoltzsyndromes.Wehave177+moretogo.

Improving Diagnosis

Families with ectodermal dysplasia are still going undiagnosed. other families are told they have an ectodermal dysplasia but not which of the 180+ types. Without a diagnosis, it can be difficult to manage and treat their symptoms, plan their families or fight their insurance for benefits. We have worked with international experts for the last decade to build a new, international Ectodermal Dysplasias Classification System which would give doctors better tools to diagnose the ectodermal dysplasias.

This system would offer affected individuals an answer to explain their condition and a greater understanding of its genetic implications. It will also give doctors a path for counseling, testing and treatment. patients, families, researchers and different types of health care providers would have a common language around ectodermal dysplasias, which enhances the communication among these diverse groups. A classification system will also move research forward. The overlay of molecular studies and clinical knowledge may result in genotype-phenotype correlations and the discovery of new mutations.

Koster

Schneider

Aaarten & Linus

Erin was born with AEC Syndrome which left her with severe skin erosion as a baby. Help us fund research to eradicate skin erosion caused by ectodermal dysplasias for good.

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