April is Volunteer Appreciation Month! All of us at the National Foundation for Ectodermal Dysplasias (NFED) honor our 500+ volunteers who are the heart of our foundation. We value our volunteers all year long but April is a special month of showing our gratitude to you. We also humbly ask you to continue your support and efforts to make a difference in the lives of those affected by ectodermal dysplasias!

Please, enjoy this tribute video created especially for you as a thank you. We 🧡 you.

I had some trouble getting my thoughts together during these difficult and emotional times. What can I say so that you know how much you mean to the NFED? Do you know how grateful the NFED is for your time, talents, resources, guidance, and ideas in helping us to complete our mission?

My first thought was so simple but a powerful one: “We 🧡 you”. Thank you! You are the heart that keeps the NFED beating for 39 years.

State Leads

The NFED is here for you with a smile, a kind word, a listening ear, a Facebook live, a helpful blog, answers to your questions, a virtual or live event, and an honest compliment. We love our volunteers and you are needed now more than ever.

We can’t survive without your dedication and your unselfish assistance. It’s all about supporting you and supporting each other. We 🧡 you. Thank you!

Kayla, Mary, Lea, Kelley, Jodi, Becky, & Tim

Thank You for Choosing the NFED

My second thought was these powerful words by Joseph Epstein:

“We do not choose to be born. We do not choose our parents, or the country of our birth. We do not, most of us, choose to die; nor do we choose the time and conditions or our death.  But within this realm of choicelessness, we do choose how we live.”

You are making a huge difference in the lives of those affected by ectodermal dysplasias. We 🧡 you! Thank you!

Family Fundraiser 15th Anniversary Rally for Ally

Your Dash

My third thought was one of my favorite inspirational poems, “The Dash,”  by Linda Ellis, which is based upon Joseph Epstein’s words. Read and enjoy it. You will not regret taking the time to let these words sink in. Live your DASH with passion and make it count. We 🧡 you. Thank you!


A poem by Linda Ellis

I read of a man who stood to speak at the funeral of a friend. He referred to the dates on the tombstone from the beginning…to the end.

He noted that first came the date of birth and spoke of the following date with tears, but he said what mattered most of all was the dash between those years.

For that dash represents all the time they spent alive on earth and now only those who loved them know what that little line is worth.

For it matters not, how much we own, the cars… the house… the cash. What matters is how we live and love and how we spend our dash.

So think about this long and hard; are there things you’d like to change? For you never know how much time is left that still can be rearranged.

To be less quick to anger and show appreciation more and love the people in our lives like we’ve never loved before.

If we treat each other with respect and more often wear a smile… remembering that this special dash might only last a little while.

So when your eulogy is being read, with your life’s actions to rehash, would you be proud of the things they say about how you lived your dash?

© 1996-2020 Southwestern Inspire Kindness, Inc. All Rights Reserved. 

Credit: By Linda Ellis, Copyright © 2020 Inspire Kindness, thedashpoem.com

We Need You

Are you interested in being an advocate or an advocacy state lead? We need you.

Are you interested in being a social media ambassador? We need you.

Are you interested in sharing your family story? We need you.

Are you interested in holding a family fundraiser or a virtual event? We need you.

Are you interested in being a family liaison? We need you.

Are you shopping Amazon online more than normal? We need you.

This is or has been a perfect time to slow down a little, and savor the memories or moments with your families, which includes the NFED family. Find your true purpose that what makes your heart flow over. Pay-it-forward and perform unexpected acts of kindness. 

It’s the hearts you touch that will determine your dash in life…and you definitely touched our hearts. We 🧡 you. Thank you!

If you are interested in making your mark at the NFED, contact me at 618-566-6871 or email me at lea@nfed.org.

Thank You

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