As a nonprofit organization serving the ectodermal dysplasias community committed to transparency, we are happy to share with you our 2017 Annual IMPACT Report. Here we report on just a few of the many activities and accomplishments from 2017. We thank the 1,823 donors and 559 active volunteers who supported us.
Advocating for Super Smiles
Ectodermal dysplasias affect the teeth causing a life-time of dental care that is complex and costly. Increasingly, the largest complaint we hear from our families in the United States is that their medical insurance company denies them benefits for their dental care. Equally frustrating is that most states have laws saying that care should be covered if it’s due to a birth disorder, which ectodermal dysplasia is. But insurance companies still deny them. Helping individual families with their appeals – which we do and it’s important – was not going to help us address the larger problem. We needed to think bigger. And we did.
In 2017, we launched an advocacy campaign to get a federal law that would mandate insurance companies to provide benefits for that care. The air was electric on the steps of Capitol Hill last July as 54 families from 28 states affected by ectodermal dysplasias rallied for change at our first Ectodermal Dysplasias Advocacy Day. Their powerful stories inspired Senator Tammy Baldwin and Representative Jackie Speier to submit ectodermal dysplasia resolutions. It was a historic moment for our NFED family. That momentum continues as we await Senator Baldwin’s announcement of a bill. We will keep fighting for our families’ power to smile. Watch this video from Advocacy Day.
Building and Connecting Our Community
We continue to be the worldwide expert on ectodermal dysplasias and the only advocacy organization in the United States dedicated to those living with these disorders. Our NFED family included 7,886 individuals affected by ectodermal dysplasias by year end. The number of new families who joined in 2017 increased by 26% over 2016. A day rarely passes that we don’t hear from another new family and we love that!
Even better than talking to families on the phone or email is bringing them together. The 36th Annual Family Conference in Falls Church, Virginia, drew the largest gathering of people affected by ectodermal dysplasias in history! What’s harder to gauge is the enormous ripple effect that the Conference has on people’s lives. They left empowered with information, a support network and newfound confidence. Families who couldn’t attend the Family Conference can now watch video recordings from six of the key educational workshops that took place. We also established several new private Facebook groups where families who share a syndrome can meet online to share their experiences and learn from one another.
Advancing Research
The year 2017 was an exciting time of research developments for ectodermal dysplasias. We launched our Impact Cures! Now Research Campaign to raise the vital funds needed to propel this work further. The most exciting announcement came from Switzerland. EspeRare, an organization dedicated to advancing treatment for rare diseases, came forward to launch a phase II clinical study for x-linked hypohidrotic ectodermal dysplasia (XLHED). This study will build on Dr. Holm Schneider’s findings that treating babies with XLHED in utero with a protein called ER-004 resulted in their ability to sweat and form tooth buds!
Our research program still supports scientists who are developing potential treatments for the devastating skin erosions in ankyloblepharon-ectodermal defects-clefting (AEC) syndrome. Work continues on a new way to classify and define the ectodermal dysplasias, Goltz syndrome, ectrodractyly-ectodermal dysplasia-clefting syndrome and issues related to women.
Increasing Our Donor Base
A growing membership means a greater demand on our resources. We are pleased to report that our income increased by 14% over the prior year. We are grateful for the 565 new donors and the 194 donors who increased their giving in 2017. The Board and staff are committed to being good stewards of the gifts you bestow upon us.
But That’s Not All
We invite you to read and share our 2017 Annual IMPACT Report. Let us know what you think. We always enjoy hearing your feedback. Thank you for being a part of our NFED family! It’s an exciting time for our community. Join us this year as we help more families with ectodermal dysplasias. We are here. Supporting you. Supporting each other.