Big Plans for 2020

January 22, 2020January 23, 2020 Category: News Posted by Mary Fete

The National Foundation for Ectodermal Dysplasias (NFED) has big plans for 2020!

As we start the year, we reflect on 2019 and we are incredibly grateful for all of your support and commitment to the NFED. We thank all of our families, donors and volunteers who contributed to our success. We have accomplished a great deal over the years but we have much work to do!  I would like to highlight a few of our 2020 plans.

Advocacy

Advocacy is a high priority for the NFED in 2020! We must get the Ensuring Lasting Smiles Act (H.R.1379/S.560) passed in Congress. This legislation would have a huge impact on the lives of individuals affected by ectodermal dysplasias.

Can you imagine having the medically necessary dental treatment associated with ectodermal dysplasias covered automatically by medical insurance? No fighting, no appeals, simply covered and mandated by law? Yes, we can! And that’s what we want for all of you and for others with congenital anomalies.

And we have until January 3, 2021 to get it passed. We all must persistently call, email, and visit our legislators, to move ELSA forward through Congress. 

In this phase of the bill, four Congressional committees must hear and review ELSA to move it forward. In case you missed the exciting news a few weeks ago, ELSA had its first hearing in the House! Kevin Koser, the co-chair of our Family-Driven Advocacy Committee, testified for five minutes and answered questions from the Energy and Commerce Subcommittee on Health. He spoke about the need for this bill and about his own experience as the father of Kannon, who is affected by ectodermal dysplasia.

Our Progress So Far

As of today, we have 272 co-sponsors in the U.S. House of Representatives. We are extremely close to reaching our goal of at least 290 co-sponsors! We also have 37 Senate co-sponsors and our goal is to garner support from at least 67. That is a huge success for the relatively short time we have been advocating. 

We have strong bi-partisan support in both the House and Senate, and we are grateful to all the legislators who support our families and have co-sponsored ELSA so far. Please continue to reach out to your legislators and ask them to co-sponsor this legislation.  

To get ELSA passed into law, we desperately need your help to make that happen. ELSA will change the lives of many people with congenital anomalies. WE NEED YOU NOW! Please do your part. Advocate.

You can stay up-to-date on our progress by registering as an advocate and joining our private Facebook group, Ensuring Lasting Smiles Act Advocates.

Family Conference:  We are trying something new!

Because passing ELSA is paramount, we are heading to Washington D.C. for this year’s Family Conference, June 22-24. This conference will mix the family connections of conference with NFED Advocacy Day on Capitol Hill.

Families often tell us they want more time to learn from each other at Conference. This year, you will get that! You will have the opportunity to connect with other families and share your own experience and wisdom.

But that’s not all! You will also learn how to empower yourself by learning how to confidently share your story with others. You will be placed on a team with other NFED families. After training and practicing what you learned, we’ll head to Capitol Hill. You and your team will visit legislators together to share your experience in trying to get dental care and insurance benefits for it. You will ask for them to co-sponsor ELSA.

This will be our most important Day on the Hill yet. We need as many families as possible to be there. You can apply for a travel stipend if you need assistance getting to D.C.

Learn More and Register

Conference from Your Couch             

Many of you have shared that you have not been able to afford to attend a Family Conference, so we decided to bring some of Family Conference to you!

That is right.  We decided to bring the educational components of Family Conference right to your living room – and for free! We are excited to announce our webinar series for 2020: Conference from your Couch.

Learn from our experts on the second Wednesday of every other month to learn more about ectodermal dysplasias, symptoms, treatments and research. For the live webinars, you can submit questions and our presenters will answer them.

Learn More and Register

2021 Research Conference

We will begin planning an international research conference that will be held in the first quarter of 2021. These conferences take more than a full year to plan. We will invite cutting edge researchers from across the world to help set our research plan for the next five years.

We will be busy writing grants, finding funding and organizing this incredible conference with one goal: to find treatments and cures for all of the ectodermal dysplasias. Stay tuned for updates.

New Diagnostic Tool

We are developing a comprehensive, interactive database that will describe all of the ectodermal dysplasias, the genes, pathways and the clinical symptoms with pictures to visually represent the individual ectodermal dysplasias. Our goal for this dataset is to be a resource for families, clinicians and researchers. 

This web-based tool will help families understand their diagnosis, help providers diagnose earlier and more accurately and to be a tool for researchers interested in ectodermal dysplasias.

We anticipate that it will launch by the end of 2020.

We are growing!

In 2020, we plan to hire a new Director of Development. This person will be responsible for creating and implementing strategies to raise the funds needed for our $986,000 budget. If we can increase our revenue, we will have more resources to help you, our families.

We added a record number of new families in 2019! This is fantastic. We will continue to seek new ways to raise awareness and reach every individual who is affected. No one should travel this journey alone.

As you can see, we have much work to do and this is just the tip of the iceberg. Join us in our efforts! Please reach out to me if you have any questions or want to be part of any of these projects.