Our hearts are heavy. The matriarch of our National Foundation for Ectodermal Dysplasias (NFED) family, Mary K. Richter, died on Thursday, November 24 from cancer. We know this has come as a shock for all of you. Amidst our profound sadness, we take this time to remember this incredible woman.

Charley and Mary Kaye in 1982.

As part of a proud farm family and also a florist, Mary Kaye never wanted to sit behind a desk. But, that’s what she did for 30 years after she founded the NFED in 1981. Her initial quest was to find information about how to care for Charley, her son affected by x-linked hypohidrotic ectodermal dysplasia (HED). That grew into something beyond her wildest dreams: a nonprofit that now serves families all over the world. She was determined to make life better for not only Charley but the entire ectodermal dysplasias community. She was a mom on a mission.

Earlier this year, we interviewed Mary Kaye and Charley as part of our 40th Anniversary celebration. She reminisced about the early days and how the Foundation came to be (read more about that here).

In her final days, Mary Kaye told Mary Fete how pleased she was with how things were going at the NFED.

Mary Kaye retired in 2010 after 30 years of service to spend more time with her grandkids and on the farm. She left the Foundation on solid footing and was delighted when Mary Fete was named NFED executive director in 2014. Mary Kaye had hired her in 2002. Fete feels the enormous loss of her passing.

“It is my honor as the executive director to continue what Mary Kaye began. I loved her, and she inspired me beyond words. She motivated me to keep making things better for our families around the world. I know that so many of you had special relationships with her and share my sadness. Please know that the staff is here for you, with unwavering support. We will get through this together. The one thing she taught us all is that we are never alone.”

A Force of Nature

Mary Kaye often said that the organization’s success cannot be attributed to a single person when so many have helped. In fact, when she was diagnosed with terminal cancer the week before her death, it’s the exact message she shared with her NFED family.

And while she’s right, it’s also true that we can thank her for having the courage and vision to begin the organization and keep the doors open. She often joked that she had no idea what she was doing so any success came as a huge surprise. Her humility belied her enormous talents. She was tenacious, a true force of nature. Fearless. When Mary Kaye retired, NFED mom Karen Forman commented, “She has a dynamic personality that makes people rally around her.”

So true. She inspired you with her passion and made you want to be a part of what the Foundation was doing. One of her first tasks at the NFED was convening a Scientific Advisory Council (SAC) comprised of medical and dental care providers. Working with them to find answers, to create educational resources and to launch a research program was one of her favorite aspects of her job.

Dr. J and Mary Kaye

Dr. Ronald J. Jorgenson served as the SAC chair from 1983-2006. He lovingly remembers working with Mary Kaye.

You didn’t tell Mary Kaye no! You didn’t step in front of that freight train!

– Ronald J. Jorgenson, DDS, PhD, FACMG

If she did get a no, it never stopped her. She pivoted and figured out another way to get her goal accomplished. The right person, the right idea and the right opportunity always seemed to appear.

The first person who told her “yes” was the late Beverly Meier. In 1981, Mary Kaye asked her friend from church if she would help her type some letters. That began their partnership, and together, they launched the NFED along with 12 other families. The duo worked side by side for the next three decades. Bevy was her dearest friend.

You are Family

If you met Mary Kaye, you likely were the recipient of her love and kindness. She had a way of making you feel seen and heard, no matter who you were. Everyone, from families and physicians to donors and volunteers, was made to feel welcome and a part of the NFED family. She set the tone that the NFED was a place to turn, where you would feel safe and no longer alone, on your ectodermal dysplasia journey.

NFED mom, Marsha Haney, of Florida was one of the people Mary Kaye made an impression on. 

“Mary Kaye was there for me when I needed someone most,” Haney said. “Our first conversation came not long after my son, David, was born with a rare genetic disorder. I knew very little about what to expect, and I turned to the NFED for information. She made me feel so special that I was chosen to be his mother. That conversation changed my life and I felt part of a larger family.”

A Way With Words

Mary Kaye and members of the NFED Scientific Advisory Council educated physicians across the United States about how to diagnose and treat the ectodermal dysplasias. Pictured are Ronald J. Jorgenson, DDS, PhD, Mary Kaye, the late Frank H. Farrington, DDS, MS, Virginia P. Sybert, M.D. and Timothy J. Fete, MD, MPH

Mary Kaye was a gifted communicator. Her thoughtful and eloquent letters were legendary. She spoke all over the world, telling the NFED story for television, women’s clubs, Kiwanis Clubs and corporations. She educated dental students, legislators and Congress. Her optimistic viewpoint became the NFED’s guiding philosophy: parents should have hope and high expectations for their children affected by ectodermal dysplasia.

Mary Kaye and Ginny Dickie

Ginny Dickie and her family were one of the earliest families, joining the NFED in 1983.

“Mary Kaye was a remarkable woman who founded a tremendously supportive organization in the NFED, helped it grow and succeed, and made sure it would continue,” Ginny said. “She was always positive, never discouraged. Although she spoke with many people on many different levels, she always made you feel that you, as an individual, were important. I will miss her and am thankful that I knew her.”

Mary Kaye loved talking with families at the annual Family Conferences.

As the mother of a child affected by ectodermal dysplasia, Mary Kaye could relate to the many parents who called the office seeking help. She had an extraordinary way of calming fears, saying just the right things and assuring you that everything was going to be ok. Always a straight shooter, she didn’t shy away from giving some tough love if she thought it was warranted. But, she always did it in a caring way and empowered parents to know they could do it.

When Marci Barbey learned of Mary Kaye’s terminal diagnosis, she shared this message for her on Facebook.

“You have always been dear to us, even though we’re miles apart and met you only once. You were a calming influence for me when Chris was first diagnosed and continued to be with every phone call I made. I still quote you—I tell people that when I first called the NFED and you answered, you asked if I had any other children besides Chris. When I replied no, you said ‘Well, this may be harder for you, but it’s important to raise Chris as you would any other child.’ Geoff and I lived by that (at least we tried—I’m sure there were times we weren’t completely successful!). It was such good advice, and to this day, both of us appreciate it.  

While serious about her mission, she didn’t take herself too seriously. We will always remember Mary Kaye’s wonderful sense of humor. She imbued her comments with lightheartedness and made the work—and there was always a lot of it—fun.

Watch Mary’s Kaye’s talk with families at the 2014 Family Conference in Columbus, Ohio to hear her insights and wonderful humor.

Playing Tooth Fairy

The NFED’s multi-faceted mission centered on support, education and research. But Mary Kaye was the most passionate about getting kids the dental care they needed. She had seen firsthand how dentures had transformed life for Charley, who got his first pair at 2½ years old. She delighted in seeing kids at Family Conference wearing their dentures. But, she recognized the many barriers families face in getting treatment and realized the problem needed addressing at the national level.

Mary Kaye was savvy in navigating systems to help achieve the Foundation’s goals. Even in the NFED’s early years, she traveled to Washington D.C. to speak on behalf of ectodermal dysplasia families and other special patient populations. Over three decades, she served on numerous committees and boards, often in leadership positions, for national entities such as the National Institute of Dental and Craniofacial Research, America’s Fund for Dental Health, the National Oral Health Information Clearinghouse and many others. She also helped start the National Alliance for Oral Health.

In meetings with these groups, she deliberately wore denim and would often begin her comments with “Back at the farm. …” The former 4H leader would proceed to share something that was happening at the farm and apply it to the topic at hand. The shrewd communicator reminded them that their policies and practices often left out people affected by rare disorders. She was the ultimate patient advocate who brought ectodermal dysplasias into the conversations on Capitol Hill. Mary Kaye was as comfortable driving a tractor on her family’s farm as she was sitting in the U.S. Congress providing testimony. She was highly respected in the dental community.

A Legacy of Love

Mary Kaye’s accolades are many. What the NFED has accomplished in 40 years would take more space than we can mention here—a treatment for x-linked hypohidrotic ectodermal dysplasia in a clinical trial, educational resources, treatment funds, and dental treatment centers just to name a few. She authored or co-authored 15 professional publications, not including the innumerable articles and publications she wrote for the NFED. She received numerous awards locally and nationally from various organizations for her pioneering efforts. While honored, she often said she was more grateful that the awards would bring attention to the NFED and its mission.

After retirement, Mary Kaye continued to attend Family Conferences when possible and advocate for the Ensuring Lasting Smiles Act. She loved keeping in touch with NFED families on Facebook. She delighted in seeing other families step up to offer suggestions and share their own experiences to help another family. It was the whole reason she started the NFED; she saw firsthand the benefits of families helping each other.

Mary Kaye leaves a formidable legacy—first and foremost, her kids and grandkids, as well as the NFED and its ongoing accomplishments. But perhaps her biggest legacy will be the impact she had on thousands of lives and the love she showed everyone she met. She was incredibly generous with her time, her attention and her kind heart.

Kris Steele, an NFED dad from Iowa, shared his thoughts.

“Mary Kaye Richter has left a legacy based on love and never-take-no-for-an-answer … and that legacy has blessed so many, helped create support groups/friendships/families for those who otherwise could have felt alone in their ectodermal dysplasia journeys, and will bless people for generations to come,” Kris said.

Honoring Her Memory

Mary Kaye celebrated with her children and four of her grandchildren at the NED’s 40th anniversary party this summer. Miles and Max Grimes, Charley Richter, Katie Richter, Rachel Richter, Katie Richter, Mary Kaye, Sharon Grimes and Mike Richter.

All of us at the NFED are committed to honoring Mary Kaye’s indomitable spirit by continuing the work that was dear to her heart. We extend our deepest sympathy to her children, Charley Richter, Mike and Jen Richter, and Sharon and J.B. Grimes; and the seven grandchildren who were the light of her life. Thank you for sharing her with our NFED family around the world.

Mary Kaye asked that gifts made in her memory be directed to the Mary K. Richter Treatment Program at the NFED.

Give In Memory of Mary Kaye

Roxanne Christensen, a member of the NFED, said it best:

You are our hero! To say the words, ‘Thank You,’ is not enough.

– Roxanne Christensen

Read more stories and interviews from Mary Kaye from earlier this year:

How Our NFED Family Came to Be

The NFED Continues to Expand in Its First Decade

5 comments on “Remembering Mary K. Richter With Great Love”

  1. 1
    Sharon F Terry on December 2, 2022

    I am so sad to hear this. I loved working with Mary Kaye as the early cadre of us led the Coalition of Skin Diseases on the Hill and in the halls of NIH. She was all that you say – a perfect tribute to this gracious force of nature. I remember many meetings with her and smile now to think of her ferocity and special brand of grace. I mourn with you, NFED and community.

  2. 2
    Jody Kronvall on December 2, 2022

    I just heard the news about Mary Kaye. She was the light for us so many years ago when we were coming to grips with our son Kevin’s challenges. She, along with Jenna Sybert helped us come to look at the big picture of what was important in life. Fast forward 31 years, our son is doing well in a career of chemical engineering. He loves the outdoors. Yes, you always wonder if you did it right with raising your child. And we had alot of great memories with raising all of our kids. But I think we did the best that we could, and I am so proud of who they all have become.

  3. 3
    Andres Trevino on December 2, 2022

    Back in late 2000 / early 2001, Mary K. Richter responded almost immediately to my message when I asked about NEMO. She introduced us to Dr. Zonana who was about to publish his research about NEMO. Without Mary K. Richter we would not have found options for my son Andy who is now 23 years old. We will remember her always. Mary K. Richter was our beacon of hope.

    “When she shall die, take her, and cut her in little stars, and she will make the face of heaven so fine, that the world will be in love with night, and pay no worship to the garish sun”

  4. 4
    Julie Claeys on December 4, 2022

    Like so many NFED families, we have been greatly and truly blessed with Mary K’s legendary life’s gifts as she guided us all in raising children affected. Her devotion and encouragement will never be forgotten. We love you.

  5. 5
    Dave Reidenouer on December 4, 2022

    ALL LUV & RESPECTS to Mary and her family –
    Super Amazing Hero and Strength
    Legacy will Live Forever !!!!!
    Thank You!!!!!!!!!!!!!!!!!
    Reidenouer Family

Leave a Reply

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