My Dear NFED Friends,

As I prepare to retire from my role as Executive Director, I find myself reflecting on the extraordinary journey we’ve shared. What began as a meaningful opportunity to serve quickly became one of the greatest honors of my life. This community has given me far more than I could ever give in return, and my heart is overflowing with gratitude, love, and admiration for each of you.

Stepping Into This Role

headshot of Mary
Here I am in 2002 after I had just joined the NFED staff!

When I first stepped into this role, I knew the work was meaningful, but I could never have imagined how profoundly it would shape me. I still remember my very first week on the “job.” I had been hired to manage the research program and found myself sitting at a small desk in the back of our little Mascoutah, IL office, wondering what in the world I was supposed to be doing. My first assignment was to plan a major research conference.

Mary Kaye and Mary have their arms around each other at a gala.
Mary Kaye Richter was my mentor and friend. 

Nervously, I asked our beloved Founder and Executive Director, Mary Kaye Richter, how I should go about organizing something of that magnitude. She simply smiled and said, “You’ll figure it out.” And she was right, I did. That conference became the first of 12 research conferences I would have the privilege to organize over my tenure.

The four women stand with arms around each other with an NFED sign behind them.
Here I am with Drs. Alanna Bree and Elaine Siegfried, and Mary Kaye at the 2003 Skin Erosion Workshop in St. Louis. It was my first research conference!

A Mentor Who Shaped My Path

I was truly blessed to have the opportunity to work so closely with our founder. She was my mentor, my friend, and a force to be reckoned with. She taught me so much about this community, about research, about the urgency of treatment, and about life itself. Her passion was unmatched, and her belief in the power of this organization shaped everything I would come to do. I still feel her smiling at me from time to time, and I hope with all my heart that my work has made her proud. We lost her in 2022, but her impact will be felt forever.

Building a Strong Research Program

One of the accomplishments I am most proud of is the strong, vibrant research program that I had the privilege to build. Seeing it grow into a robust initiative that drives real progress for families and fuels collaboration among clinicians, researchers, and advocates has been incredibly rewarding. It stands as a testament to what this community can achieve when passion, dedication, and collaboration come together.

 Professor Holm Scheider and I with a young girl with ADULT syndrome at an NFED Grand Rounds in 2022. It’s been thrilling to work with Professor Schneider on the XLHED research and Edelife Clinical Trial.

Strengthening Education and Dental Access

As the years passed, I also witnessed our professional education efforts strengthen into powerful partnerships that elevate awareness, improve care, and draw more clinicians and researchers into this important work. We have also significantly improved access to dental treatment by building the Dental Treatment Centers Program and adding hundreds of educational information. Being part of this growth has been a profound gift.

I’ve enjoyed working with all of the professionals who have served on the NFED Scientific Advisory Council through the years.

Gratitude for an Exceptional Team

I want to express my deepest gratitude to our incredible staff, Board of Directors, professional volunteers, and mentors who have walked beside me through every challenge and every triumph. Their dedication, creativity, expertise, and unwavering commitment to this community have been the backbone of our success. I have learned so much from them—their professionalism, their compassion, and their tireless drive to make a difference. Working alongside such remarkable individuals has been one of the true joys of my career, and I will forever be grateful for their partnership, support, and friendship.

The staff are posed in two rows in front of a neutral background. The staff are all wearing black shirts.
I’m grateful for the staff and their dedication to NFED families.

The Family Conference: My Annual Highlight

And then there is our Family Conference, my highlight every single year. It was at my very first conference, standing among families, caregivers, professionals, and friends, that I realized this wasn’t going to be a short-term chapter for me. The connection, the courage, the shared hope in every room made it clear: I was home. Each conference since then has reminded me why this mission matters so deeply and why this community has become such a cherished part of my life.

What This Community Has Taught Me

I am profoundly thankful for the trust you have placed in me, for allowing me to listen to your stories, to advocate on your behalf, and to walk beside you through challenges and triumphs. You have taught me resilience. You have shown me compassion and unity in action. You have inspired me every single day.

A Request as I Transition

As I transition out of my role, I have one gentle request: please continue to support this remarkable organization in whatever ways you can. Whether through your voice, your time, your expertise, or your financial contributions, your involvement is essential. This organization truly counts on the generosity and commitment of the community to ensure that families are supported, that vital research continues to move forward, and that our programs remain strong and accessible to all who need them. Every act of support—large or small—helps sustain the mission we all hold close to our hearts.

Not Goodbye, but a New Chapter

Although I am retiring from my position, I am not leaving this family. I will continue cheering you on, supporting where I can, and celebrating every milestone that lies ahead. This community has become woven into who I am, and that connection will remain with me always. I am confident that the incredible team and community will continue to grow, innovate, and support families in ways we can only imagine.

With Deep Gratitude

Sending all of you big hugs, and yes, there are tears in my eyes as I write this farewell letter to this incredible community. My gratitude runs deeper than words can express, and while stepping away is emotional, it is also filled with hope, pride, and love for everything we have built together. You will always be a part of me, and I will always carry this community in my heart.

Thank you for the privilege of serving alongside you. Thank you for the memories, the lessons, the laughter, and the shared purpose that has carried us forward. My heart will always be with you, and I cannot wait to see the incredible things you will continue to achieve.

With all my love and deepest gratitude,

Mary Fete Signature

Have a comment or question? Contact us