I have been thinking so much about you and your families during this challenging time. I know, without a doubt, that you are strong. Many of you have been homeschooling your children. Kids are under feet all day and I bet most of you are trying to work from home.

I have seen your strength in challenging times, whether dealing with a new diagnosis or managing the challenges associated with the diagnosis. You’ve got this and we can do this. You are my HEROES!

We are very fortunate that the National Foundation for Ectodermal Dysplasias (NFED) went into the COVID-19 crisis in a strong and stable financial position. And we have you and your generosity over the years to thank for that! All of our funds are directed to serving the ectodermal dysplasias community and our work is driven by our mission. We will continue to do just that during these challenging times.

The NFED just received our Paycheck Protection Program funds, which really helps our financial stability over the next several months. Whew, what a process that was! I am sure many of you could share your similar experiences with me, but it may be too traumatic to relive.

We are Safe!

Yes, the entire NFED staff is safe. In talking to many of you on the phone and social media, it seems like many of you are also safe and doing as well as you can be. We continue to work for you, only we are working from our homes instead of the NFED office. Instead of business casual, we are wearing business sweats! (I am sure you understand.) You can continue to reach us by phone, 618-566-2020. We are here for you, as always.

We are Here!

Whether it’s in person, on the phone or virtually…know how much our staff cares!

In fact, we are working harder than ever to provide new and expanded programs. There’s so much more that we can offer to provide support, care, and assistance for you and your families. You can still expect to see our traditional programming that has been part of NFED’s core values since the beginning. But, we are also working on new ways and special projects to meet your needs.

Fighting for Your Smile

One of our high priorities, passing the Ensuring Lasting Smiles Act, is at a critical point right now. We have seven months to get this bill passed. What would that mean to you and your family?

It means that medical insurance would have to cover the medically necessary dental treatment associated with ectodermal dysplasias. No more fighting the insurance company and no more denials!

We dream of this world and it is at our fingertips. Starting over in 2021 is simply not a good option. If that happens, many individuals will go without dental care, and that is simply not right. 

We have come too far to run out of steam now! Please join me for our Virtual Advocacy Day on June 24. We need 500 men, women and children to storm Capitol Hill – virtually!

We Are Virtual

Many, if not all summer camps, summer sports and activities for kids have been or will be canceled. What are the kids going to do? We have a great idea for you!

We know the kids are going to miss seeing all of their friends this summer with Kids Camp canceled. So, we’re taking it online!

We know the need is huge, so we are working on virtual activities to take the place of our Family Conference canceled due to coronavirus. This will include creating a virtual Kay’s Kids Camp and Teens Program. Thanks to the generosity of the Louis and June Kay Foundation, we are working on creative programming, games, music and other things that kids can enjoy safely in your home. In fact, we think you’ll enjoy some as well!

We will also soon launch Kay’s Kids Corner, a dedicated page for kids on our website. We can’t say it enough…thank you so much for your generosity, Mrs. Kay!

We are expanding our “Conference From Your Couch” Webinar Series. Since we can’t gather as one big family to share ideas, seek education and support one another in person, we are developing more content for our webinar series. You will be able to meet virtually with other families in syndrome-specific webinars to share your wisdom, learn and build your support network.

Of course, you can still receive support from our staff in filing your insurance claims and getting answers to your treatment questions. If you are struggling financially because of the COVID-19 pandemic, contact us when your child is ready for dentures. We may be able to help you through our Treatment Assistance Program. You can also apply for a cooling vest, wig or air conditioner.

These are just a few things that your NFED staff is working on for you. If you need anything, even if it’s just to talk, give me a call! I would love to hear from you.

Together, we are Forever Strong! 

We are strongest when we stand together. Your generous support and help empower us to do great things for the ectodermal dysplasias community. We need each other more than ever. We are partners in hope – now and forever!

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