I hope 2019 is off to a good start for you and your families. It has been cold and snowy here in the Midwest. Today, I am looking out my window at the beautiful snow and bright sunshine. It truly is beautiful.

The National Foundation for Ectodermal Dysplasias (NFED) has jumped into 2019 full speed ahead! Let me share just a few things that we are doing to make sure that you and your family have the resources you need.

First of All:  ELSA! (Ensuring Lasting Smiles Act) 

We want the United States federal government to pass a law guaranteeing the payment of health insurance benefits for medically necessary care and treatments due to congenital anomalies, which includes all of the ectodermal dysplasias.

Senators Tammy Baldwin (D-WI) and Joni Ernst (R-IA) introduced the Ensuring Lasting Smiles Act (ELSA) to the U.S. Senate on August 23, 2018. Former representative David Young (R-IA) and Rep. Collin Peterson (D-MN), introduced the first version of the companion bill to the House as well. Due to the start of the new congressional session in January, ELSA needs to be re-introduced in both the House and Senate.

Mr. Young was not re-elected and you began reaching out immediately to your representatives to find a new Republican co-lead. In a short amount of time, a family from Virginia was able to secure Congressman Denver Riggleman (R-VA) as our new co-lead with Congressman Peterson. Senators Baldwin and Ernst remain our Senate co-leads.

Bi-Partisan Support

We have bi-partisan support in both the House and Senate. This is simply fantastic news! Together, we are going to get this bill passed into law.

We are hoping that ELSA will be reintroduced very soon. We will keep you posted on any new developments. We will need ALL hands on deck to get this passed. This means we will be asking you to contact your legislators on a regular basis and ask them to co-sponsor ELSA. Our team has been working very hard to garner all the support that we can. Stay tuned!

Here is my promise to you: We will not stop until we are successful.



We have also made research a priority for the next five years. We are hoping to share some updated information soon regarding the ER-004 project. This is the x-linked hypohidrotic ectodermal dysplasias research project that EspeRare is sponsoring. Read here for more information.

Ectodermal Dysplasias Classification

We are excited to announce that the Ectodermal Dysplasias Classification Project has finished phase one. Just this month, the proceedings were published in the American Journal for Medical Genetics. Since 2008, our experts from around the world have worked to determine inclusion and exclusion criteria for ectodermal dysplasias. In an upcoming blog, we will share more information about their conclusions and our long term plans to develop a searchable database.

Growth in Goltz

The 2015 Goltz Research Conference proceedings were also just published in this prestigious journal. At this conference, we looked at the growth pattern in children affected by Goltz syndrome. Researchers concluded that there may be underlying treatable causes for short stature in some individuals with this condition. We are grateful to all of our families affected by Goltz who volunteered for this important research.

Impact Cures, Now!

We are pushing the needle forward, in order to help as many individuals as we can with ectodermal dysplasias. Yet, we know we have so much more to do. Last year, we embarked on a major research campaign called Impact Cures, Now! to raise $250,000 over the next three years, specifically to fund research. If you would like to contribute to our groundbreaking research, please donate now.

Supporting You

Supporting all of you is our highest priority!  Remember, we are just a phone call (618-566-2020) or email away. You can find new articles in our library on treating various symptoms you may experience. We are planning one of our biggest Family Conferences ever, which will take place July 11-13th in Chicago, Illinois. Sweet Home Chicago! Please join us. Click here to register.

We continue to build our Dental Treatment Centers Program, to improve access to dental care for your family and all NFED families. We will announce a new center soon. Stay tuned.

Funding is available for kids who need dentures. So, if your child is missing teeth and needs dentures, please start the process by filling out our Treatment Assistance Program application. Every child deserves and needs teeth. Contact us if you need help with funding.

Tell Me

I would like to hear your suggestions on how we might improve our services and resources for you and your family. Please contact me at mary@nfed.org.

Our Seriously Silly Staff

I need all of the calories I can get to keep up with the pace!

I could go on and on! But, now I want you to hear from the NFED staff, so you learn more about what we are all up to, and get to know us better.

Kelley does her best thinking when taking office siestas.

Kelley Atchison
Director, Family and Community Programs

I look forward to talking to our families throughout the year and planning our two major events, Family Conference and NFED Advocacy Day on Capitol Hill.

Kayla is always the picture of calm when managing our data and cleaning up spreadsheets.

Kayla Hollenkamp
Administrative Assistant 

This year, I am focusing on cleaning our database so we can get up-to-date information to our families in a more cost effective and timely manner. I am also working with the Treatment Assistance Program to help kids get funding for dentures.

Lea loves to count the money our families raise.

 Lea Richardson
Manager, Community Engagement

I am working hard to motivate and encourage our NFED friends and families to create fundraisers to raise money for advocacy, research, treatment and other important programs the NFED offers. I also share their success stories on our blog and social media. I would like to continue to build an engaging NFED volunteer community through our ambassador program to keep our commitment to serving our families and our community alive. Supporting You. Supporting Each Other.

Jodi deciding shouting about ectodermal dysplasias at the Grand Canyon was a good way to celebrate Ectodermal Dysplasias Awareness Month.

Jodi Edgar Reinhardt
Director, Marketing and Communications

 I am working to find creative ways to share your stories to get more people engaged in our mission. Raising awareness is always the key first step and have been working to make this month, Ectodermal Dysplasias Awareness Month, our best yet. I also work to improve our online home at NFED.org so that it is a place for you to easily find information, learn the latest news and events, and access programs that you need. I’m always looking for great photos, videos and stories from our NFED families and hope you will send me yours. Right now, I need stories from families in the United States about their attempts to get dental care and their experience in whether or not insurance paid for it. You can submit your story here. Finally, I continue to enhance NFED’s presence on social media. I hope our Facebook, Twitter, Pinterest, and YouTube channels provide a place for you to connect with other families who are living with ectodermal dysplasias and with us!

Brittany is always finding new ways to raise money for our mission.

Brittany Campbell
Director, Development

I’m working hard to raise money so that our programming only gets bigger and better to make your lives the best that they can be!

Becky is our newest staffer. We think this smile and clean desk means she’s up to something.

Becky Abbott
Manager, Treatment and Research

This is a year for change! I will continue to advocate to ensure that no family has to fight or struggle to obtain medical insurance coverage for treatments to repair their congenital anomalies, including dental treatments. With persistence and determination, I will work alongside our families, to make sure the Ensuring Lasting Smiles Act becomes law. Looking forward to making a difference in 2019.

Leave a Reply

Your email address will not be published. Required fields are marked *