In 1981, a farm wife in Southern Illinois wrote letters to dental schools across the United States. She asked them if they had ever treated anyone with ectodermal dysplasia, like her son, Charley. The first to respond was a pediatric dentist from Virginia. He picked up the phone and called her.

Dr. Frank Farrington and Mary K. Richter circa 1990s

He not only had seen six patients, but he offered to help Mary Kaye Richter with her idea to create a group to help families. His name was Frank H. Farrington, D.D.S., M.S. And her idea became the National Foundation for Ectodermal Dysplasias (NFED).

We’re sure that when Dr. Frank made that first phone call to Mary Kaye, he never dreamed it would lead to what he later described as the most important thing he had ever done in his professional life.

It is with incredible sadness that we share that Dr. Farrington passed on April 10 after being ill for a few years.

“Our hearts are heavy knowing that our beloved Dr. Farrington is gone,” NFED Executive Director Mary Fete said.

“Perhaps no other health professional has impacted our NFED family more during his 40 years of service to the Foundation. He got involved before there was even officially an organization. I can’t imagine the NFED without him. He had dedication and heart.”

This week is Volunteer Appreciation Week. It seems incredibly fitting to remember and celebrate one of our ultimate volunteers, Dr. Frank.

In the Beginning

Dr. Farrington joined the NFED’s Scientific Advisory Council when it first formed in 1982. So little information existed about ectodermal dysplasias and so much research was needed. He and the other SAC members charted a course to help the Foundation find those answers.

Mary Kaye remembers what a good friend Dr. Farrington was to the Foundation, especially during the formative years.

Early in the development of the NFED we needed a Superman to help pave the way. Frank was one of three who provided advice, guidance and counsel. But most of all, he provided loving support and willingness to help whatever the need. There was no assignment too big as Frank was always ready to help. If the NFED has a hero, it’s Frank Farrington.

In those early days, Frank was instrumental in helping write educational articles and our first Dental Guide about how to treat the dental needs of ectodermal dysplasias. He listened to families at Conferences and shared what he’d learn so far in treating patients.

As the Foundation grew, he attended national and international professional meetings on NFED’s behalf, spearheaded a dental research survey and helped develop our first patient questionnaire. Dr. Frank alerted the Foundation when he saw opportunities for the NFED to participate in national oral health conversations as patient advocates. He reviewed research proposals, advised families, educated other dental professionals and advocated for families’ need for insurance benefits.

Even as far back as 1983, Dr. Farrington recognized the challenges NFED families were starting to face getting health insurance companies to cover their dental care. He worked for years with the cleft lip/palate communities to get a regulation passed in Virginia for people affected by congenital anomalies to get benefits. This early advocate made sure ectodermal dysplasias were covered by it.

Summers With Frank

Most families remember Dr. Frank from Family Conferences. He was a fixture at these annual summer events until the last few years when his health prevented him from attending. Until then, he would proudly tell you that he had only missed two since 1982. He kept every Conference t-shirt and wore them as badges of honor at other conferences.

“Our prayers are being lifted for his family. This sweet man taught us more in 10 minutes than we had learned in the five years Michael had been alive,” said Kara Roberts, mom of son affected by ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome. “His efforts to help the ectodermal dysplasia community were very much appreciated!”

Besides giving dental presentations at Conferences, he made himself available to talk to families and answer their questions. He not only gave the dental consults but made sure the Foundation had dental chairs to use by driving them to each location for us.

“Dr. Farrington was a wonderful man.” Jana Luallen, grandma to Christyn, who is affected by Goltz syndrome, recalled. “He always made the kids feel so at ease during their dental exams and he always had a joke for them. He was loved and he’ll be missed.”

The Cookie Monster

Frank was a family man. He loved his NFED family and we loved him. His daughters, Kim and Kristen, attended a Conference on occasion or he sometimes brought one of his grandkids to be in Kids Camp.

In the 1980s, Dr. Frank earned the nickname, Cookie Monster. The NFED’s only employees at the time, Mary Kaye and the late Beverly Meier, would bring their children to Family Conferences. It was these kiddos who bestowed the name on him. Bev’s daughter, Heather Land, was just a little girl then.

“I consulted with Sharon (Richter) Grimes and my sister because honestly, I’m not exactly sure any more why we called him that,” Heather said. “What we remember is he really loved cookies and talked about them a lot. He was so loveable and squishy like Cookie Monster!”

The ever affable Dr. Frank seemed to love the name. Given he was a pediatric dentist, he was always great with children.

Big Thumbs Up

Dr. Frank shows kids how dentists make impressions to make their dentures.

Many years at Conferences, you could find Dr. Frank in the Kids Camp rooms. He would be sitting on the floor talking to the children about their teeth, how to take care of them and why it was important to wear dentures. To help them understand what dental impressions were like, he’d have them make an impression of their thumbs! He brought supplies and mimicked the process. Each kid went home with their very own thumb sculpture.

Dr. Farrington holds up a thumb impression he made with a young man in Kids Camp.

It’s impossible to recount here all of the ways in which Dr. Farrington contributed to the ectodermal dysplasias community. His commitment went beyond leading research, speaking at dental symposa or writing articles. In 2003, he also joined the Board of Directors and served as the liaison to the SAC until 2017. He was literally involved in almost every facet at some point in his 40 years of service.

Dr. Frank, who lived in Virginia, would often come to the NFED office in southern Illinois to pick up supplies to drive to Family Conference. It helped save shipping costs! An avid golfer, he was a frequent participant in our annual golf tournaments even though they were half a continent from where he lived. And, he often attended the Halloween Bash in New York City. He simply was interested in everything the Foundation did and wanted to help.

Another pediatric dentist and long-time NFED volunteer, Dr. Tim Wright of the University of North Carolina Chapel Hill, talked about knowing Dr. Farrington.

Frank Farrington was many things to many people – a mentor, father, grandfather, dentist, teacher, and always a friend.  He was a guiding force for the NFED for decades and it was remarkable to see his energy and passion for taking care of kids – especially those that were part of his NFED family.  I had the pleasure of working with Frank in a variety of circumstances but nothing made him shine as much as the days spent visiting with the families at the NFED conferences.  I will miss having Frank as a mentor, a teacher and as a friend.

He Could Be Silly

There wasn’t much that Frank wasn’t game for. In the late 90s, when we played Wheel of Fortune at a Family Conference, Dr. Farrington dressed up like Maxine, the character on the Hallmark cards and did a commercial. As hard as he worked, he was always agreeable to whatever crazy ideas the staff had.

Mary Fete presented Dr. Farrington with the Dr. John E. Gilster Service Through Dentistry Award at the 2015 Family Conference.

For all of these extraordinary contributions to the NFED family, we were proud to honor Dr. Farrington with the Dr. John E. Gilster Service Through Dentistry Award in 2015.

He Simply Cared

Perhaps his most lasting NFED legacy will be the children, teens and now adults affected by ectodermal dysplasia who got the dental care they needed…because Dr. Frank was their dentist. Or, because he taught their dentist. Or because he was a leading advocate for the importance of dental care at an early age. Or because he taught parents how to advocate for their child’s needs with their dentist back home.

Dr. Farrington, Anil Vora and Penny Sprecher Catherman at the NFED’s 30th Anniversary Gala.

Tim Catherman, father of Andrew who is now an adult, recounts a time when Frank went the extra mile for his family.

“Frank was wonderful. I’ll never forget the time he rushed a set of dentures because we accidentally flushed them when Andrew was sick. He came to our rescue on a pinch!”

Forever In Our Hearts

Dr. Frank with one of the thousands whose lives he touched.

In a letter dated 1988, the NFED asked Dr. Farrington to continue serving on our SAC. He accepted with these wonderful words that capture Frank’s essence.

“My years with the Foundation have been very special to me. I have learned a lot and I only hope I have been able to give back just a portion of what you have given to me.”

Dr. Frank, if you only knew.

Charley Richer, Mary Kaye’s son, said it best.

“There may not have been a kinder, more caring soul. He positively impacted thousands of lives when they needed him most. Rest in peace, Cookie Monster.”

We thank his four children, Kim Swedberg, Kristin Gaulin, Joe Farrington and Rob Farrington for sharing their dad with us for the past four decades. We extend our sympathy to them, their spouses and the grandchildren he loved so much, as they mourn the loss of the guy they lovingly called “Daddyman.”

He spent most of his dental career at the Virginia Commonwealth University School of Dentistry where he retired as Emeritus Professor of Pediatric Dentistry. Dr. Frank practiced for almost 50 years, and was dedicated to children with special needs. He published numerous journal articles and served as an officer of many professional organizations.

Do you have a favorite story about Dr. Frank? Tell us in the comments below. We would love to hear it!

12 comments on “Celebrating Our Superman’s Legacy”

  1. 1
    Kristi on April 22, 2020


    1. 2
      Jodi Edgar Reinhardt on April 22, 2020

      Hi, Kristi and Bob. Thank you for the kind words. It’s our honor to write this for Dr. Frank. It’s the very least we can do. We are glad it could provide you a touch of happiness during your time of grief. We remember him talking about Wisconsin and his days in Madison. We are so glad you wrote to us. He will forever live in our hearts! ~ Jodi, NFED, Director, Marketing and Communications

  2. 3
    Kim on April 22, 2020

    You summed up my daddy perfectly. He loved the NFED passionately…the mission, the families, the conferences. He always told me that if you enjoy what you do you will never work a day in your life. It was never work to him. It was pure joy!!!

    1. 4
      Jodi Edgar Reinhardt on April 22, 2020

      Oh, Kim, we love to hear that. We know how heavy your heart is right now and we send you all kinds of virtual hugs. So glad you liked the tribute. He made it easy to write. Take care! ~ Jodi, NFED, Director, Marketing and Communications

  3. 5
    Guadalupe Velarde on April 22, 2020

    I am very sad to find out of the passing of our dear Dr. Farrington, what can I say. HE WAS A GREAT PERSON, DOCTOR. he treated my family, my nephew as if we were the only patient that matters, I am grateful for all his help, on my last conversation I told that my family will always need his help and that Just by mentioning his name all doors are open for me, then, he said, I don’t think so, the only door that will open will be the closet. Then he laughed. I assure him that is not true, it open the big doors. I will always remember him, my deepest condolences to his family.

    1. 6
      Jodi Edgar Reinhardt on April 22, 2020

      We love to hear that you got the chance to work with Dr. Frank! We aren’t surprised to find out what a great experience you had with him. Thank you for sharing! ~ Jodi, NFED, Director, Marketing and Communications

  4. 7
    Kristin on April 22, 2020

    Thank you for sharing this beautiful tribute to my father. The NFED was so important to him and I always felt like everyone became a part of our family. So many memories created and wonderful times enjoyed in great company. Thank you for honoring him; although I’m sure he’d say that the pleasure was all his. He had plenty of love to go around and I’m so happy that so many people got to experience it.

    1. 8
      Jodi Edgar Reinhardt on April 28, 2020

      You are welcome, Kristin! We send you our love and hugs as you work through your grief in missing your dad! ~ Jodi, NFED, Director, Marketing and Communications

  5. 9
    Dee Dee Olsen on April 23, 2020

    Dr Frank was all that is good in the world. Love, kindness, patience, acceptance, reassurance. He was a beacon of light and hope and an exceptional listener and quick with a smile. What an honor it was to know him. God bless Dr Frank, his body of work and of course his family – thank you for sharing him with us.

  6. 10
    Julie Claeys on April 23, 2020

    Rest In Peace Frank as you have dedicated yourself to so many. Never a conference without you and your humor, smile, informative guidance, and hugs for so many kids. You gave so much to our family and so many others for so many years. We are grateful to you Kim, Kristin, Rob, and Joe for sharing your Dad with us.

  7. 11
    Jack kriz on April 27, 2020

    As I wipe the tears from my eyes reading this news, I can only say Frank was indeed one of the most gracious of all the wonderful people I have ever met. I am so fortunate to have known him! I am thankful I was able to work with him during my time on the NFED Board of Directors to further the mission of the NFED in service to our families. He will indeed be sorely missed by me, and the NFED!

    1. 12
      Jodi Edgar Reinhardt on April 28, 2020

      We are right there with you, Jack! ~ Jodi, NFED, Director, Marketing and Communications

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